About the author
‘If I didn’t have sex organs, I wouldn’t waver on the brink of nervous emotion and tears all the time’
Sylvia Plath, journal entry, 1950
[Note: There is compelling evidence that writer Sylvia Plath had severe PMS/PMDD]
Ms Jekyll & Hyde, suffered from a life-destroying form of the endocrine disorder Premenstrual Syndrome (PMS), also known as Premenstrual Dysphoric Disorder (PMDD). Determined to be cured, at the age of 35 she elected to have a oophorectomy / hysterectomy with removal of the ovaries (LAVH BSO), on the NHS, in London. The operation is currently the only permanent cure for severe PMS/PMDD. It has been very successful for her!
Ms Jekyll & Hyde started this independent blog to chronicle and share what she’s learnt. She believes that currently most doctors are woefully ill-informed about how to diagnose and treat this disorder, this must be changed. BUT women must also empower themselves with knowledge in order to get the best out of a seven minute consultation with their doctor.
TIMELINE
2000’s >
From her early twenties, Ms Jekyll & Hyde was been plagued by horrendous mood swings which worsened in her early thirties, including having suicidal thoughts; this played havoc with her relationships and career. Over a period of a decade she saw a number of GP’s for depression, in the UK and in Australia, but not one of them suggested she track her depression alongside her menstrual cycle.
GP’s only prescribed:
- anti-depressants (SSRIs), i.e. Zoloft
- birth control pills
- Cognitive Behavioural Therapy (CBT)
- seeing a psychiatrist
She also tried these these supplements that were available without prescription, none made a positive difference that she could detect:
- St John’s Wort
- Agnus Castus
- Evening Primrose oil
- fish oil / omega capsules
- multi-vitamin & mineral tablets
- vitamin B6
- calcium
2009
By 2009 (aged 32) she wondered if she might have Soft Bipolar, Bipolar II or Cyclothymia. She was terrified at facing a life long battle with the ‘Black Dog’ and wondered if she would eventually take her own life. Divorced, she wondered if she would be able to sustain a relationship.
After a great deal more online research, Ms Jekyll & Hyde finally put a name to what she believed was wrong – severe PMS/PMDD. She had about two ‘good’ weeks per month (some women have less than one good week per month!) and was exhausted from years of rebuilding her sense of self-worth and confidence after every monthly crash. She had not previously been aware that PMS/PMDD could last for 10 days or more. Tracking her menstrual cycle against her mood swings/physical symptoms left her in no doubt about her self-diagnosis.
She experimented with taking anti-depressants only during the ‘bad’ half of the month – she responded to them within hours*, but even tiny doses made her feel woozy and exhausted for days.
2011
In January 2011 (aged 34), she discovered the (old) NAPS forum and Professor John Studd’s site, and wept with relief, feeling sure that hormone treatment would help her. In January she also learnt from her online research that hysterectomy with removal of the ovaries is currently the only true cure for PMDD, which felt devastating and astonishing initially. However, it was absolutely amazing to learn that a permanent cure for her cyclical depression might be possible!
Desperate to see a specialist quickly, she had a private appointment with Prof. Studd in London. Studd agreed with her diagnosis – he was the first doctor to offer her anything other than anti-depressants/CBT/psychiatry; he prescribed hormone therapy (HRT). Her experience on HRT was proof that she was severely progestogen-intolerant. She could not afford to continue seeing John Studd.
She transferred her treatment to the NHS, to leading PMS specialist Mr Nick Panay, at Queen Charlotte’s & Chelsea Hospital, London. This was a massive relief. She requested injections of the GnRH analogue Decapeptyl (another is Zoladex), to temporarily shut down her ovaries and mimic a menopausal / post-hysterectomy state, whilst continuing with HRT (estrogen and testosterone only). This was a great success, she had her brain back the whole month long! She had not felt this mentally stable since perhaps her teens – this gave her great confidence that a hysterectomy was the right path for her. She remained on Decapeptyl right up until the hysterectomy.
2012
Determined to be permanently cured, and after extensive research and deliberation, she had a oophorectomy / hysterectomy with removal of the ovaries (‘LAVH BSO’ – this means ‘Laparoscopic-assisted vaginal hysterectomy with bilateral oophorectomy’), this includes the removal of the cervix, in February 2012, aged 35, as it is currently the only permanent/’true’ cure for severe PMS. The operation was performed at Queen Charlotte’s & Chelsea Hospital, London, under the care of leading PMS authority Mr Nick Panay (but by another surgeon), on the UK’s National Health Service (NHS) – it has been very successful.
Ms Jekyll & Hyde is indebted to the brave women whose stories and advice she first encountered on the NAPS forum in 2011 (sadly the old NAPS forum posts have all been removed, though the forum is now open again) – without the support of this community, she might not have plucked up the courage to go through with the hysterectomy, due to the regrettable lack of independent information available. She is still in touch with a number of these women, she is not aware of any who regret their decision to have a hysterectomy for PMDD.
2017
Ms Jekyll & Hyde, now aged 40, is a strong advocate of HRT, she takes both oestrogen and testosterone (6 monthly injections of estrogen) and has no plans to stop. She remains under the care of the NHS, for the management of her HRT.
She is absolutely convinced that a oophorectomy / hysterectomy with removal of the ovaries was the right choice for her. She is free from monthly mood swings, is moving forward with her life with a new vigour, though there are some learned behaviours to shift. The nightmare of living with PMDD now feels like a bad dream.
Severe PMS is the sort that destroys careers and marriages is paradoxically easier to treat because the severity requires proven treatment administered by a medical practitioner. These treatments essentially rely on suppression of ovulation and thus removing the hormonal changes (whatever they are) of the ovarian cycle and hence removing the cyclical symptoms of PMS.
Professor John Studd DSc, MD, FRCOG
All truth passes through three stages
First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident
Schopenhauer
*A trait common to PMDD and Bipolar Disorder. See Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder, by Jim Phelps M.D.; and Severe PMS and Bipolar Disease – a tragic confusion by Prof. John Studd
SHARE YOUR STORY ANONYMOUSLY ON THIS BLOG
I would love to hear from women who rid themselves of PMDD / PMS by having a oophorectomy / hysterectomy with removal of the ovaries. By sharing your story anonymously on this blog, you can ultimately help countless other women who are currently suffering and feeling very alone. It doesn’t matter how long ago you had a hysterectomy, or maybe you had the operation for another primary reason. You can provide as much, or as little, information as you like. Please drop me a line by commenting below one of the posts on this blog.
I log-in to read / approve comments about once a month, so please bear with me. This is because I don’t want to be continually reminded about this topic, now that it’s behind me.
GENERAL QUESTIONS ABOUT PMDD / HYSTERECTOMY / HRT
- FIRST check out the links below the blog, starting with Professor John Studd’s site.
- NAPS forum – very useful indeed! Find others to talk to. Post on the forum if you’d like someone to add you to an excellent private independent Facebook group for women considering/or post hysterectomy for PMDD.
- Check out HysterSisters or the Hysterectomy Association, both have excellent forums.
- There is a lot of information to take in so keep a record of what you’ve learnt as you go along.
FINALLY
I am not a medical practitioner, I am sharing information in order to help other women. This blog is independent, all views are my own. Do your own research, think about it, pick what works for your body, your medical history, your life. Take good care of your body AND your brain, weigh up the pros and cons of treatment for YOU.
Don’t scare yourself unnecessarily by doing online research until the early hours if you’re feeling terrible, everything seems far worse in the middle of the night! The internet is an incredible research tool, but there are some scaremongering anti-hysterectomy propaganda sites out there, containing a disgraceful plethora of inaccuracies and sheer nonsense!
I wish you all the best in progressing your treatment for PMDD. Track your moods against your cycle. Be strong.
Updated February 2017
Life after hysterectomy for PMDD / PMS [aged 35]. UK 
I’ve massive story and lots of new findings… Its going to take me a while to type up
Hi there I read your blog a few years ago after my own struggles and finally got a Hysterectomy (they took everything out!) at 34 with no children. I had a year on zoladex and had my op 6 weeks ago. I’m struggling just now as some of my symptoms seem to have come back in big way despite the estrogen patches for the last 2 weeks. I see you have a Facebook group and wondered if I could join. I’m really struggling to get any info post op considering I’m going to have to be on HRT for a long time I want it to be right and don’t want the pain and upset of the past few months to be on vain. Thanks
I am considering this too (ovarian removal). I had a partial hyster two years ago with ovAries left behind. I think it was a mistake. I was told I may have low estrogen and was started on some transdermal cream, but two weeks a month I am so weak I can’t get out of bed, my heart races, and my anxiety goes high. I think it’s from the progesterone my body releases. My doctor has told me to reduce estrogen and this while thing is so entirely cyclical that I want the cycling to end! So desperate at this point.
Hi. I am almost 43 and have suffered for many years with the ups ad downs of my cycle but noticed a clear link whilst trying for my 2nd child and monitoring my cycle closely 3-4 years ago. From the point of ovulation up until I start to bleed I become a different person. I was totally fine whilst pregnant – nice and even. This week my GP finally referred me to a gynaecologist – it was such a relief but I fear my battle is to start all over again. I am closely monitoring my cycle and tracking it with the tracker in Nick Panay’s RCGO paper I found here on you site. I want my husband to come to the first appt with me so he can explain how I change and how it effects my relationship with him and my 2 children. I want to be me again all of the time. I feel like I am cracking up at times! Any advise on how to approach and explain at my 1st appointment would be most welcome. I really can’t continue like this. Your website has been so informative and I now realise I am not alone so thank you.
Could you also add me to your Facebook group please?
Many thanks again
SJ
Hi Ms. Jekyll & Hyde,
I am in the unique position of being a transgender individual who struggles with PMDD. I am not a woman, I am a transmasculine nonbinary individual and one thing I was excited about with starting HRT for gender dysphoria is that it would hault my menstrual cycles. It did stop the physical symptoms, but I have still been experiencing the cyclical PMDD symptoms. I have been desperately seeking support and answers for endocrine, neurological, and psychiatric problems that have put my life at risk and very nearly killed me, many if not all of which are related to PMDD.
Thank you for sharing your story, and for putting this up as a valuable resource for those struggling with PMDD. I am trying to go through with a hyst, and your blog has been an excellent source of inspiration and I intend to share it to my providers. If it is at all possible I could discuss these issues in a more private setting or be added to the support group, I would be more grateful than I can express. Thank you so much.
Hi im 49 i suffer from severe pmdd feels like im ok 1 week out of a month the rest of the time im very angry suicidial had an attepmt 3 weeks ago anxiety the only way i can explain it down right crazy i wish they would just take it all out but they want to try a drug named lupron first has anybody taken it im scared to death if it icreases all this then im on the ride of my life for three months its not a pill i can just stop taking i feel like a menace to society.
Hi im 49 i suffer from severe pmdd feels like im ok 1 week out of a month the rest of the time im very angry suicidial had an attepmt 3 weeks ago anxiety the only way i can explain it down right crazy i wish they would just take it all out but they want to try a drug named lupron first has anybody taken it im scared to death if it icreases all this then im on the ride of my life for three months its not a pill i can just stop taking i feel like a menace to society.
Hi 👋 I’ve had a full hysterectomy 8 weeks ago. I was feeling myself more and more each week, until I started oestrogen patches a week ago. I feel nauseated 🤢 can’t move as my head is spinning and joints hurt. I’m so scared that I am never going to live a normal life . I do badly wanted to put this PMDD behind me but my problems r still there. Please help me as I struggle looking after my two year old
Hi, I am 39 years old and I was diagnosed with PMDD a few years ago. My gynaecologist has finally agreed to remove my ovaries and am waiting for the appointment letter. Was told the op would probably be around Aug/Sept time. After reading others ladies comments on here I am concerned I am not having a hysterectomy alongside oopherectomy. Should I get in touch with my gynae about this? Please can I also be added to the secret facebook group? Thank you.
Hello MsJekyllkyde et al. Kym here. Just an intro.
Around my 46th birthday last year (May) I started having ’bouts’ of off-the-charts anxiety, panic attacks, times of constant crying and both plans for and one feeble attempt at suicide.
I can’t imagine what you ladies who’ve had this from a young age and suffered for years have gone through. It does sound as though this gets progressively worse with age. I seemed to have hit peri-menopause and the depths of PMDD in one plunge.
I’ve been a clean eater for years. Vegetarian/pescatarian for more than 20 with a stint of paleo a few years back. Supplementation, natural remedies. Up through 2015, physical challenges were my thing tough mudders, etc. Personality, I’ve always been talkative, altruistic and always up and in a good mood.
I’ll admit to past alcohol abuse tendencies which, for comparison’s sake, I’ll say were being managed. I drank socially or at home on weekends, but with no brake. About five years ago, I’d find I’d binge one weekend/month… always PMS time.
2016 I started finding I’d have that fight or flight instinct if faced with too many decisions and general hopelessness. Then it was just times of needing to flee (I left four separate exercise/yoga classes within an hour in a panic). I was acquainted with anxiety but met Anxiety. Suicide level depression. I thought this is what I was sentenced to now: I’d become this panicked, depressed, can’t even do what I love woman which probably contributed to the suicidal thoughts. My drinking for ‘fun’ turned more into drinking to drown. More like marinating turds in pee broth – of course booze makes it all worse. It no longer seemed PMS related because it was starting at luteal and carry through menses. I’d get maybe one good week.
In suicide ward in October 2016 (drank, took any pills I had and had been weeping, talking of killing myself for days). They of course addressed the drinking only and I was given ONLY a whopping dose of gabapentin. I already had Valium at home. I went and requested Celexa (citalopram) to address the depression. I could only take half tab (5mg). Put these together in the right combo and you don’t drive so well. You don’t even remember starting the car. Cops don’t much like that.
Next stop: holistic rehab. The booze is the only reason I’m suddenly so depressed and ready to off myself so everyone says (never had that effect before). It IS of course the most clear thing that doesn’t belong. There I’m not detoxed, diagnosed as manic/bipolar/borderline. I am given Seroquel for insomnia (huh?). Seroquel, for those who don’t know, is an anti-psychotic. If you’re not psychotic, it will make you so! I was still on a wee bit of Celexa (and a host of other baddies). Presto, six days of that combo and nights of seizures, daytime mania and jitters and finally left in ambulance convulsing/vitals through the roof. Serotonin syndrome.
Self diagnosed January 2017. I don’t know what took me so long. I’d heard of PMDD back in my 20s and thought “really? now we can’t handle a little PMS? that has to be a disorder too?”
I guess I gave so much background because its hard to reconcile these two people. Happy, goofy, active me vs belligerent, boozing, angry, crying, freaking out me. I went from fearless/try anything to fearful/cowering. It turned my world upside-down. I put on hiatus an eight year successful business and doubt I’ll go back to it. In the last year I’ve been in a suicide ward, psych ward, rehab, ER x 5, met some men in uniforms. I’ve got easily a dozen different prescriptions around. SSRIs, benzos, some oddballs.
I found my reproductive endocrinologist and he confirmed my diagnosis as severe. He tried Prometrium (progesterone, 200mg x 2) first with a Prozac backer. We were both Prozac shy because of the serotonin syndrome and the cognitive issues I was still having (though in hindsight, the forgetfulness/being unable to process comes with the luteal phase as well). It got really dark the first month with him and I did try a whole Prozac. Numb, sad, zombie. Try taking one of those out of luteal and you’re in a lower circle of hell wherein you’ve googled and found a site giving suicide options and tips.
Because of my age, I’ve had two times of a ‘false’ period in the last year. Those were months when I thought all my herbals had taken the edge off this PMDD. Period late, then barely anything but luteal not awful. Some anxiety, emotion but totally livable. And then I’m clobbered with the real thing worse than usual. Those are the two “hello Mr Officer” months. Late May/early June 2017 was basically a disaster for a full month.
Now I’ll take a half Prozac as needed and am still taking progesterone. I’d concluded after last month this was not working. Long-time boyfriend kept asking about hysterectomy. I was like “shut up, I wouldn’t tell you to cut out your boys!” But I remembered this blog from the end of last year. I did my own research.
Last Weds I had an appointment with my doc. He was annoyed I’d not called him as instructed (any time day or night if I’m in crisis) and instead was nearly kicked out of my house due to my escapades . I immediately asked about hysterectomy and he said he’d noted last time he thought I may be a candidate but we’d see how the next month went. Yeah, well, it was the worst yet.
Having unemployed myself, I’m now on Medicaid. We’re of course testing with Lupron Depot shot to mimic menopause. Who knows whether they’ll cover the shots but he’s posing it as dysmenorrhea (debilitating cramps) in hopes they will but I paid $1200 out of pocket for this little ticking time bomb injected last week. I’ve been warned I’ll have 15-20 hot flashes per day in three weeks and increased anxiety. Increased? There’s more? Yikes. Make me sweat all day but more anxiety? I’m determined not to add vodka to the mix now or then.
We’ll draw blood then. He’s kind of going the endo angle for insurance purposes. After, we’ll try add back estrogen to relieve the menopause. He’s not going to be doing major surgery after the end of the year so our goal is hysterectomy by 2018!
Today I awoke rough. Everything except suicidal thoughts. Half Prozac while still in bed then almost passed out in the kitchen. Never done that before (taken it early). Then snipped off about 1/8 nugget to add because I’ve been teetering. I don’t know if today was worse because of the shot or just because I’m a week into luteal and have been sober.
I’ll keep everyone up to date on my mental/physical state as I progress through this first shot of Lupron Depot, injected last Friday (today is Monday). Because I became a s***faced mess last cycle, I wasn’t keeping my BBT/moods and don’t know exactly when I’m due. I just know I spent all last Tuesday crying. I usually start with a few days of being scatterbrained but I think because my cycle was off and I was on a bender, I may have not noticed those days.
Hi – I have to admit I’ve been looking at your site for at least 5 years while struggling wildly to manage or tame my PMDD with EVERY. SINGLE. THING. It’s basically official now that I HAVE to get a total / complete hysterectomy to stop this hell (I have months with only 5 good days sometimes.) Luckily I’ve FINALLY found a physician who will even consider removing them (PS – Anyone in Central Ohio, USA who knows a physician who takes this seriously, I BEG you to let me know!!!!) He wants to start with a 3 month trial of Zoladex to “be sure it will help”. Since I’m desperate, I agreed and should prob start next month, but I am PETRIFIED of these injections – having read all kinds of things and knowing how I respond to ANY hormonal shifts. I noticed you have a “secret” facebook page – I wondered if I can please be added? Mainly just to fill my head with hopeful stories and something and someONE read about during this frightening time… since we all know, no one understands this fully unless you have it – even most physicians still insist it’s “overreacting”, “just pms” or “depression with a little exacerbation”. I just need to be with my people who know this stuff, please. Thankyou! and thank you for this blog!!!!!
Hi Stephanie
Don’t be afraid of the injection it’s a necessary process. Intially you will have a hormone surge and for a week or so things are not great but stick with it and the improvement will come. It gave me an idea of what life could be like without my ovaries. I recommend some add back estrogen to help you deal with the side affects of the medical menopause. You may not get any but unfortunately I did. In order to be the person you want to be and live the life you know you could have you have to take these steps so don’t be over anxious- go with it. I’m due to have surgery in the UK soon, there are days when I’m overwhelmed with fear other days I’d like to remove my ovaries myself and get on with living my life ;)) good luck on your journey x
Hello! New here but had stumbled upon blog six months ago after finally getting confirmation on my own diagnosis of PMDD.
I’ve been taking progesterone and was given a scrip for Prozac. Prozac is usually the first line of defense but in one ugly episode of misdiagnosis end of 2016, I’d had Serotonin Syndrome induced over a few days (rather than the usual immediate onset and hopefully quick fix it not fatal. I was seizing and in renal failure). It left me with some residual cognitive issues, and EEK PROZAC issues already present. Progesterone? Maybe some help, I can’t tell but I’ve resorted to Prozac halves during the worst times (now being one).
I had the same reaction as the author upon finding hysterectomy as a solution (it was actually this blog). I thought no way, those are my girly parts and I pictured a gaping void in myself. Six months later I’m here to say GET OUT THE GIRLY PARTS DOC!
For insurance purposes I just got the Lupron Depot shot to mimic menopause. I was about four days into luteal. No add back. My doc is going the route that I have dysmenorrhea, debilitating cramps assuming crippling PMDD will not fly. We’re (we being my long suffering boyfriend and me) worried frankly. Doc warned me three weeks from now I’ll have increased anxiety! You mean there’s a higher level? Egad. And 15-20 hot flashes per day with night sweats. 20 flashes, you’re really just ablaze all day. During that time we’ll get blood drawn. Doc said that then we can do the add-back/ HRT for relief but we need the blood work first.
We’re all so hormone-flux sensitive, I’m not sure how this will play out. Fortunately, this is just to test to be sure hysterectomy would be the magic needed and for insurance proof.
I’m now on Medicaid. I unemployed myself from my own successful company of eight years in December 2016. I thought my work was causing my monthly desire to kill myself, the days of crying and what I picture as a lab monkey in a cage in my head, jumping up and down banging it’s head on the ceiling and rattling the bars, shrieking. I also get a tremendous and irrational urge to drink, which I would act on despite knowing, during good days, that it makes all this 10x worse though at the time, being passed out seemed better. But that’s for a different post. If anyone has had this facet thrown in, by all means contact me. Throw substance abuse labels into the mix and it’s THE default diagnosis. Can any of you imagine being told to 12 step your way out of PMDD? Can you even imagine sitting through a meeting on those days? Homicidal ideation.
Anyway, I’ll be back with updates as to my mental state in the upcoming weeks having had menopause induced. I’m scared but curious to know how this shot alone can be a solution when it sounds like a new brand of nightmare ahead (unless that’s just the first month).
I just turned 47 by the way. I have no kids, never wanted them. Tube tying I was all for. Complete removal still leaves me feeling hinky but I know those parts emanate evil. Image flash of my womb with devil’s face with ovaries as twisted horns. Good, less hinky.
Oh! Today I awoke feeling the worst so far. It could just be the norm. I popped half Prozac from bed at 7am which I’ve never done. I’ve been holding off, taking the half as needed which is usually between 10-12. I have to go to DMV to replace my license. It can’t wait past Wednesday. This should be interesting. Keep eyes out for news of murderous rampage at NJ motor vehicle!
Hi Stephanie, can I ask if you had testerostone to?? I’m in UK have obs &gyn Friday . Next step is injections . Really not looking forward to this but I’ve come this far .
I know after op Dr Panay advises estrogen & testerostone . Why not before?
Also what’s this secret Facebook group ?
Have you had your op ?
If so how r you ?
Thanks Zoe x
I was diagnosed with PMDD at the age of forty, 18 months after my daughter was born. From around 10 days from the start of my period I became angry, irrational. anxious and completely fatigued. Realising the diagnosis helped to make certain lifestyle choices. Zoloft improved it almost immediately however side effects were too much. As the years went by, the duration of symptoms increased to over two weeks. I was completely unaware that surgery could stop it all….until I needed a hysterectomy for severe adenomyosis. Because of my worries about ovarian cancer and some family connection with the disease, my Gyno agreed to take them out at the same time. After the surgery I noticed myself feeling different mood wise. As the date of my would-be period went by, I realised I hadn’t had that usual feeling of being trapped in a room with a bomb about to go off. Things that would normally have fired me up went by without event. It was kind of weird. Then I looked it up ‘pmdd and removal of ovaries’ and realised why. Two months post surgery and my life is looking so different. My relationship with my husband is reviving and as my daughter is soon to enter her teens, I’m confident I’ll be able to handle her hormonal challenges ahead. I’m 49 and obviously not having any more children. At the moment I firmly believe that more women who have finished their families (or not planning on one) should be given the risk information and then the choice of surgery to end their misery. I’ve completely changed my diet and increased exercise to address the increased risk of heart disease and osteoperosis. So much more needs to be done to recognise pmdd and what it does to women and their families.
Thank you so so much for the reply. I was given tibolone/livial in the final month of my decapeptyl course but by then the medical menopausal had hit me hard, the headaches and the sweats being the worst, so I didn’t feel the full benefits of how the add back estrogen could have worked for me. Tibolone mimics progesterone, I have always reacted badly to progesterones. I was unsure if progesterone would still affect me with my ovaries in shut down. Feeling physically rubbish I stopped all the treatment (Dec 2016), I’m going Cold turkey with the PMDD whilst I wait for my op. However, for anyone reading this in many way the Decap jab was an amazing relief mentally. The link to the FB group didn’t work for me. Would you re send? Again, thank you.
Hi, invite re-sent.
My understanding (as a lay person) is that progesterones are the main culprit re the awful low moods of PMDD. I.e. that PMDD sufferers are acutely sensitive to them – whether or not we still have ovaries. This is why we need our ovaries AND womb removed, to remove PMDD symptoms. In order to keep one’s womb, one would need to take a progesterone every so often in order to shed the womb lining.
I agree, the Decapeptyl jab is amazing proof that the op will alleviate the symptoms of PMDD.
Best wishes
Hi , what’s this secret Facebook please ?
I’m in UK and about to start injections x
Can msjekllehyde send me her email address.. im a 44 yr old woman.. has suffered with PMDD for long time. Just recently diagnosis…PMDD.. thought I was bipolar. Going to plan for hysterctomy with removal of ovaries. Hormone replacement scares me. But I hate living like this also.
Hi BJ.
I’ve sent you an invite to the ‘secret’ Facebook group. Search PMDD on FB for other support groups.
Please post any questions for me here. Best wishes
Hi, I discovered your site a couple of years back, for someone in my position the information your provide and your story are a life line. I’m 42, pmdd sufferer for 27 years. My story mimics yours exactly. I’m on the waiting list for Tah & Bso. My anxiety level are through the roof, I know this is my only hope and the only cure. My decap injections were amazing, the fog, negativity, fatigue, frustration and anger all gone but with no add back estrogen my menopausal systems were harsh. I’m desperately looking for advice about hrt post op. I’m petrified the op will strip me of everything that makes me feel young and femine (on my good 2 wks). I’m as negative about surgical menopause as I am pmdd. My life is on hold and I want to feel positive about my future. Please could I be added to any FB group or any other suggestions. Thank you in advance x
Hi, I’ve sent you an invite to the ‘secret’ Facebook group. Search PMDD on FB for other support groups.
HRT has had unfair negative press in the past. Great site: http://www.studd.co.uk/hrt_current_thoughts.php
Why didn’t they give you add back estrogen? As you know, I am a strong advocate for HRT and have estrogen and testosterone. Best wishes
Hi Catherine, well, it has been 5 months and one week since my total hyster. I have my ups and downs. I can handle the physical stuff – hot flashes, nigh sweats, etc. However, my mood has been more low than high. I had ppd 17 years ago, and suffered my whole life with pre-menstrual dysphoric. I don’t handle stress well and often just want to be alone. I have had my good times – the Christmas Holidays were good for me. I just saw my psychiatrist last week. Added another anti-anxiety to the mix. I am currently on 6 medications to manage my depression and anxiety. For me, it is one day at a time. I have faith that things will get better.
Thank you for sharing your story! I am 33 with two young daughters and suffer significantly with this every month. I’ve seen general doctors, Gynos and psych and they all prescribe anti depressants (which ive been on for 8 years with no improvement) and then recommend birth control. I don’t want to take the birth control because, with the research I’ve done, I’m very concerned about progesterone intolerance and they always try to get me to take a progesterone containing bc!
I’m hoping to see a new gyno soon and begin the process of actually treating pmdd so that I can work towards getting a TAH/BSO.
I will continue to check in here and appreciate the experiences that you share!
Yes, I had my complete hysterectomy 5 weeks ago. I really started feeling the effects of immediate menopause 3 weeks post-surgery. They say it can take a bit of time before your body is completely deplete of estrogen stores. Physically, it is a pretty big ordeal. The first two weeks are a blur – of physical pain and sleep. Week after I felt the menopause – hot flashes, headaches, etc. In terms of mood, it’s up and down – that is to be expected. It takes time t heal and adjust, but I don’t miss my period one bit.
Keep me posted on your end 🙂
Heather
Hello Heather
I’m wondering if I may ask how you have gotten on since your hysterectomy? I had a hysterectomy a October 2016 and seem to be experiencing some ups and downs in terms of hormones. Sometimes it feels like I still have PMDD! I would be interested to hear from you.
Kind Regards
Catherine
Hello Catherine. I too had a hysterectomy in Oct. I felt wonderful until I hit the 6.5 month mark. Now I am struggling with my hormones. I am on a bioidentical patch. I think my sypply of natural hormones must of ran out. I react poorly to.hormone fluctuation also.
I’m sitting at my desk at work weeping (quietly!). I’m 47 and I have a long complicated history of what I now realise has been misdiagnosed PMDD (not depression, soft bipolar etc etc). It seems so obvious now.
I read your story with great interest. I’m going to see my GP this week, armed with lots of new information. It is extremely frustrating that more GPs aren’t more informed about cyclical depression. It really does destroy careers and marriages.
Best of luck with everything xxx
Thank you. Eleanor
Hello, I am 43 years old and had a complete Hysterectomy 5 1/2 years ago. I lived with PMDD for 24 years. I would love to be added to your facebook group & would love to share my story of my journeys through this horrible diagnosis!
Hi, I’ve emailed you.
Hi Valerie,
I had a complete hysterectomy in October 2016. I have been experiencing some severe hormonal fluctuations, so similar to PMDD! May I ask about your experience post hysterectomy? I’m not sure if what I’m experiencing is normal or not.
Thank you
Thanks so much, I’ve read your story and it’s given me such hope.
I am so excited I came across this website. I have suffered from PMDD for two decades. It has ruined intimate relationships, including a marriage.
I have been diagnosed with several different disorders, yet the times I’m at my worst fall 14 days before my period starts and lasts a couple days into the start of it. Every time I was hospitalized for depression, the stays fell within that time period. I was finally diagnosed with PMDD in 2001, a year after my son was born. I am on YAZ, Buspar, and Zoloft (all which have been approved for PMDD)…even with the “help” of these medicines, I feel like I just want to end it all; every.freakin.month.
I emailed my OBGYN last night begging her to see me so we can talk about removing all of my lady parts. I have an appointment on 11/23, which feels like it’s years away in this moment.
I see a therapist weekly for complex PTSD and she has noticed a trend in my mood(s). When I walk into her office feeling out of control, she asks me where I am in my cycle – big surprise, ALWAYS during the same two weeks. The other half of the month I’m happy, easy going, stable and able to work through trauma from my past; and most importantly I am able to enjoy my relationships and my life, which during the two weeks of hell I just want to end.
Thank you for sharing your story and giving me hope!!
Oh Wow! I am so fortunate to have found this blog! I am 45 and currently waiting a surgery date….complete hysterectomy. I had Post-natal, very sever post part after my daughter was born in 2000. I attempted suicide three times. Now that I am perimenopause, I suffer severe PMS. Take it all out! I desperately need relief. Looks like surgery late Sept, early October .
Heather, good luck! I am going down the same road as you & cried when I saw all these women going through the same things as me. NHS has refused my total H so will have to go private…but it’s worth it. Good luck to you, keep us updated if you feel able
Did you have your surgery yet? I am now deciding if/when to get mine…
Hello, I want to get a complete hysterectomy. I want to have as little questions as possible. I just would like to find a doctor willing to make an appointment and remove it. Do you have any advice as to how I can find a doctor who would be willing to perform this operation with as little hassle as possible? I need someone who isn’t going to give me the bs about being too young, and needing it for kids. I need this taken care of as soon as I can. Thank you.
Hi, I wrote this post previously, hope it helps.
But are you guessing??? I highly suggest you do a test to figure out if you have PMDD. I am a man- and so I cannot fully understand what you are going through. But i have watched my wife go through hell. And if your hell is similar to hers then I have empathy. Doctors do not tell you this because few ever put 2 and 2 together about it BUT there is a way to figure out, in my opinion, if you have PMDD- you can get a Lupron shot. Lupron will shut down your menstrual cycle for 6 months. You can usually get a back to back shot and be rid of your period for as long as a year. Now IF you have PMDD then this will cause you to go through HELL for the first month (I mean you may want to be committed) but then life will be grand. Smooth sailing. You will be happy. This happiness, however, will be fleeting as your PMDD devil (if you have it) will demand blood and it will try to make you bleed and eventually you will have a period like you have never had it. IF YOU GO THROUGH THIS then yes a hysterectomy will likely make your life easier. you will go through hell for a month after your hysterectomy and then life will be much better. Butu if these things do not happen to you on Lupron then PMDD may not be your issue and a hysterecomy will give you all the cons and none of the pros. you can contact me if you wish and I can tell you about the years of research I put into this and why I know what I know. vinny@yellowhouseservices.com
Thanks- my wife is DOING AWESOME. She now functions. She does things. She has fun. She still has some depression but not nearly the extent is was. I am so glad for her hysterectomy! Of course we are trying to adopt now so if you know anyone looking to place a child, of any age, who needs a great set of parents then contact us!
Thank you so much for this! I have PMDD, fibromyalgia, and IC. I have tracked my cycles with my symptom and my gyno is glad I did. I am now getting a hysterectomy and oophorectomy Sept. 23rd. I have so much hope that this will make life better. Like you it just went down hill very quickly in my 30’s. And quicker once I turned 32 and had my fourth child.
Hi! I’m looking to speak to women who’ve had a partial or total hysterectomy in an effort to cure their PMDD. It’s for a very big site – VICE – so will be seen by a lot of people and be very helpful to other women who are looking for options. hannah.ewens@vice.com
Hi Louise,
I know how you feel.
I had an Oophorectomy just over 12 months ago for my severe pmt…since then I have tried various types of Hrt, all of them giving me pmt symptoms as I am progesterone intolerant.
I have been to gp today to be referred back to consultant, she is baffled as to why I wasn’t given a full hysterectomy in the first place…I feel cheated!!
Hope you have a speedy recovery..take it easy!
Lisa
Hi. I’ve just had a full hysterectomy three weeks ago. So it’s still early days I’ve been on HRT for a year already for severe PMS. I’m hopeful and positive abt the future as this has destroyed so much of my life. I also started my treatment with dr Studd. Was able to have hysterectomy on NHS though. Just suffering major insomnia at mo. Not sure if I need to up oestrogen. I use the gel. Got check up on few weeks and also with dr Studd. V excited though.
Hi Louise
I am due to have my hysterectomy 10th June and can’t wait!! how have you been feeling since yours..I noticed the words ‘very excited’ that has to be a grate start 🙂
Tracey
Hi! I’m looking to speak to women who’ve had a partial or total hysterectomy in an effort to cure their PMDD. Do you think you would possibly chat to me Louise? It’s for a piece to raise awareness for a very big site so will be seen by a lot of people and be very helpful to women considering it. My email is hannah.ewens@vice.com if you’d like to get in touch. All the best, Hannah
Desperate in canada for help.
45 severe Pms. No one yet will remove. Do u know a resouce in alberta canada
Thanks
Naomi
Are you still looking for someone Naomi? I’m in Sask and had my complete hysterectomy last January.
I’m in Alberta too, did you find anyone to help you?
She has depression. There is no getting around that. The cycle makes it worse. Its like pouring gas on a candle. She has not worked for 13 years- she couldn’t. She could actually go to work now but we have a 4 year old and she is a stay-at-home mom. The best I can tell her body just doesn’t react well to estrogen. After her H she had a horrendous depression. I mean she had to be institutionalized. But after 7 weeks it went away and her life was BLISS. It has gotten worse recently but I think that’s because the Doctor quadrupled her estrogen. You might try what I call the PMDD experiment. Get you Dr to medically induce a hysterectomy by giving you a shot of Lupron. My wife had this 3 times. Now if you have PMDD you probably going to HATE your life for the first 7 weeks after the shot. It shuts your ovaries down. You will get hot flashes and all the fun stuff associated with hysterecomy but without the ectomy. If you do a lot better after for the remaining 4 months then maybe a hysterectomy will help you. Keep in mind, however, that your body might declare war on you after 6 months and decide to bleed for a good month or so.
Vinny, I just want to say you are awesome for being so helpful to your wife through all this. How is she doing now?
I do not reccomend the big H because the grass may not be greener and it is a permanent move. You should consider having your Dr give you a shot of Lupron. It will shut down your ovaries for 6 months. You will be in medically induced menopause. Hot flashes and all. You will probably go INSANE for 7 weeks after getting the shot but then see how you feel. If you feel better then maybe the big H is an option to consider. If your symptoms do not get better than maybe an H would not help you.
Hi.. Please help.. I’ve tried HRT for 10 months & it didn’t work, coil didn’t work, pill & antidepressants don’t work & for the last 2 years I’ve had acupuncture nearly every month & daily Chinese herbs.. This does help massively, more than anything but I still have up to 5 – 10 days of sheer exhaustion, muscle & joints feel like they’re wasting away, adult acne, confusion, anxiety, irrationality, fear, migraine & I can’t get out of bed.. I have a 9 year old son to look after, I can’t hold down a job because I’m always going to be sick.. I want it to stop but what do I do? Hysterectomy?
Dear Chloe, please look at the information available on Professor Studd’s website: http://www.studd.co.uk (The clinic is based in the UK, I don’t know where you’re based.)
I’m not dismissing Vinny’s experience, but please, realise that this is only one account of hormonal troubles. Every woman is different and there maybe other underlying conditions that are affecting you. Don’t take one account as the only rule for issues concerning hormonal trouble.
I really encourage you to read through the information on the website and even take some of the material, you find relevant to you, to your doctor. Discuss with them about the next steps open to you to take.
From my personal experience, I found this website incredibly helpful and was able to get the information I needed to make an informed decision about what I needed to do, in order to feel better.
It’s worth giving yourself time to read the information and discussing it with a doctor who deals with female health.
Take care of you – Verity
I guess she technically quit cold turkey but she went directly onto Xanax so that’s like stopping drinking whiskey and starting up on scotch. Getting off the Xanax was hard- and still is. Her Dr titrated her off over a weeks time. She still wants it. Its hard but she is handling it. You should try Lupron and I will tell you why. Because if your depression is linked to your estrogen then Lupron will tell you if a H will have a significant impact on your depression. I imagine PMDD is an under-appreciated diagnosis and some GYN still don’t know about it. My wife started taking Prozac AFTER her H. I had reason to suspect she would have a massive depression (needing hospitalization) following her H because she went through it twice when she got the Lupron shot. Like clockwork she was much better 7 weeks later. But Lupron carries its own issues- just use it as a test. See if it helps. If it doesn’t then perhaps an H (ovaries too) will not help your depression. Good luck. Don’t give up hope. Don’t settle for a blanket diagnosis.
Ativan is a benzo. my wife took it before xanax. Know what you are doing. I’m not saying its the devil but it can be. talk to a PHARMACIST about your consumption and ask them for their advice. Go to a different pharmacist if you are afraid your own might cut you off. but if your body has gotten dependant on the ativan then you mighht feel anxious because your last pill wore off. And thus you have a problem.
Thanks for your concern Vinny. I am a nurse and well aware of the problems with Ativan. I do my best to keep my use minimal but have no doubt that I am addicted at this point. Unfortunately, I cannot tolerate anything else for the anxiety and depression that get very much heightened at various points in my cycle. That is why is am afraid to do lupron or hyst. Because if for some reason my depression/ anxiety gets worse I cannot take like a Prozac or Zoloft. But all of my providers feel that getting my hormone levels stable will help these things greatly and I may even be able to tolerate a Prozac type med without my body reacting so to the hormone changes. That is why I was wondering if your wife was taking the Prozac before her surgery or after?And if it has been at all helpful? Plus, I’m so surprised she was able to get off of Ativan Ina a few weeks. Again, did they use the Prozac to help,with that? I can’t imagine she went cold turkey.
I think that is great to hear.! When they took off the benzos is that when they started the Prozac or was she I that before? Getting off benzos is often a rough, rough thing in and of itself. Let alone while adjusting to such a huge hormone change. You guys are inspiring to have hung in there through all of this. Let me know about the Prozac if you can get a chance. Txs. Again for sharing.
Hi. This post was for you Vinny. Not sure why didn’t go under your last post. And I am also the Cindy that has commented before. I must have two accounts going.
This is probably TMI and I’m probably going to get the “eye roll” for posting this but my wife actually HAS A LIBIDO since her surgery. She hasn’t had one in a decade. Its fun to see her happy about intimacy and of course I like it too. Our marriage has improved greatly. Now I don’t think surgery is the cause but the getting off of the Benzos. Beware of Benzo pills like Xanax. They can do more harm than good. In this case I suspected they were the CAUSE of the anxiety she was taking them for. After a week in a mental hospital and a month of not taking a single one her life is much improved.
Hi Vinny. I left a separate entry above. Not sure why it went there was trying to reply to you. Glad your marriage is improving.. As I asked above was your wife on Prozac pre surgery or did they use that to help her get off the benzos. I too am using ativan for anxiety but can’t to get off of them with all of my hormone craziness. I also wonder that I too am sensitive to the estrogen as well as the progesterone. It is really any change in my hormones causes chaos. My doc has seen cases like that and those patients he keeps on .ower doses and the hot flashes seem to decrease over time. Txs again for responding so very helpful.
I will have to get back to you on the units. She is on the patch and pill but total dosage is not close to your dosage. I have noticed a significant decrease in her moods with the increase in her estrogen and a decrease in her hot flashes as well. Her hot flashes were/are HORRENDOUS but they sure beat the debilitating depression she used to have.. She is also on Prozac. I am starting to wonder if estrogen is just no bueno for her. You gotta have it, of course, or the risks are severe. But I wonder if a low dose is best for her. Thanks for the info. I will ask her doctor about the gel. -Vinny
I hope the extra estrogen.has helped your wife. I was wondering if she been taking any anti_depressants or any other psych needs prior to or after surgery you mentioned the benzos she was taking. But wondered if anything else and if they were helpful. Your responses are very helpful. Thank you.
she has been on a patch (premarin?) but it is only 0.1 and its as high as it goes so the Dr just ordered her a pill and its 0.6 so combined she will get 0.7. the pharmacist says it takes about a month to notice a difference from a change in hormone dosage.
Hello Vinny, could you define ‘0.6, 0.7’. Are the grams or another measure?
I ask, as I have had a full “H” & ovaries removed and if the values your stating are in grams, I’m wondering if your wife’s Estrogen levels are being kept low for a reason.
I’m taking HRT ( no progesterone, as I’m intolerant and don’t need it as I have no uterus now ) and my daily dose is 5.0 grams of Estrogen. I’m using a transdermal gel applied once a day – “Oestrogel”. Have the doctor’s suggested this for your wife? I was told by my doctor that the gel is more affective than patches or oral HRT.
My best to you both.
Hi. Hope your wife is feeling better with the estrogen increase. I was wondering if she it’s on any other psych meds. Like.Prozac, etc. I know you mentioned in past post she stopped benzos. Hoping things are still.improving your responses are very helpful. Thanks.
She had everything taken out 7 weeks ago. Now when she got Lupron previously she went absolutely insane (no other way to explain it) for about 7 weeks. Then life got remarkably better. The second time she had lupron she did not go crazy because it was administered back-to back. Lupron lasts about 6 months and so the second shot was administered 6 months after the first. Finally her uterus declared war on her and she bled so bad she needed a transfusion. So she stopped with Lupron for a year or so. She used birth control pills to regulate. Didn’t much help. Then she tried Lupron again and for 7 weeks went crazy. So years later…she just had her ovaries removed. She has gone crazy, as I expected. My theory is that after 7 weeks she would get better. Like clock work she has recovered remarkably in the 7th week. now she also went to a mental facility from week 5-6 and got off of benzos (xanax, etc) which has REALLY helped. My suggestion is that if you think you have PMDD then get Lupron. Deal with the hell for 7 weeks. If your moods improve for the next 5 months then either stay on Lupron or perhaps the full H will help you. The lupron puts you into menopause as it shuts down your ovaries. Our house is now about as cold as Alaska as my wife deals with hot flashes. BUT I HAVE NOT SEEN HER THIS HAPPY IN OVER A FRIGGIN DECADE. good luck
Thank you for updating us. I am sorry to hear the first 7 weeks were so scary. But happy to hear she is finally doing better. Has she been taking any hormone replacement since the surgery? If so, what kind? Thanks.
Hi Vinny,
I believe my issues are hormone related as well and your wife’s story struck a chord with me because I feel this is happening to me as well. I noticed the writer of this blog states that her depression was strictly cyclical, but you had stated that your wife’s depression had been on going for many years and would get worse with her cycle? Did I interpret that correctly? At 38 I was experiencing pms depression only but now at 40 I’m finding it to be ongoing. Was your wife’s ongoing as well once it started or just during her cycle?
My wife just had a full H because of PMDD and also because of melon-sized cysts on her ovaries with questionable pathology. I have seen her have Lupron a few years back- it shuts down the ovaries for 6 months. Her life got worse for a month and half and then it got better for 4.5 months. The problem was that eventually her ovaries would declare war on her and she would bleed for over a month and need a transfusion and have to take lots of bcps to get the bleeding to stop. So I thought life would be bliss when her ovaries were cut out. But life is not bliss. not yet anyway. It has been about 6 weeks now from her surgery and she is currently in a mental hospital. She went into a deep DEEP depression. Now this may be her body adjusting to the lack of ovaries (which happened when she got Lupron previously) and if so then hopefully she will come out of it very soon. But it is scary to watch…
Hi thanks for setting up great site. I have PMDD and have had it for many years, it’s horrendous….it’s as if I live in a life of negative thinking, irritability and low self worth. Then as if by magic mood completely lifts a week before period, it feels so good to feel ok with everything!!!! Then lo and behold it comes back within week of finishing period. It’s almost as if a fog follows me around. Anyway had the injections to turn off ovaries 3 years ago, it really helped, of course it didnt cure all, I do believe some things you have to work on, but, pmdd symptoms reduced drastically. I stopped taking injections 2 years ago I was getting to dread the injections and due to my job kept missing appt to have injection. Worst thing I did….I was ok for while then PMDD came back with avengence, just been to doctors who referred me to consultant gynaecologist who specialises in effects of PMDD and ooverectomys. So relieved, as I know I’ll get an unbiased medical opinion and hopefully be able to decide if I should or should not have ooverectomy with complete confidence in my final decision due to being well informed by someone who knows the hell that PMDD can create. Going more towards an ooverectomy. I just dont want to live like this for next 5 to 10 years, i don’t think any woman with PMDD should.
Ms J&H
I was quite relieved to see your site. I ran into your site a year ago. I may be the only guy on your site. I love my wife very much. We have been married for 14 years. About 13 years ago she entered a depressive state which has been getting worse. She has been unable to even work. She was put on Lupron which induced menopause when she was just 35- it was horrific for the first month- turns out she should have been given some estrogen along with that but her doctor was a friggin idiot. But as I recall the Lupron was helpful after the initial shock. But eventually the uterus needs to bleed and 40 days and 40 nights is about how long that went on….she even needed a transfusion. We we never ventured back to Lupron after a second dose. She had 3 D&Cs. She has been to a psychiatric hospital numerous times. About a year ago when she was admitted in patient it was requested that I pick her up tampons. I went to the local pharmacy there which I realized I had been to before. Each time she was admitted I had to buy her tampons and I always went to the nearby pharmacy to get them. That’s when the lightbulb went off that her depression was likely being caused or exacerbated by her period. and sometimes her period would last for a month. They are horrible. I completed tons of research and concluded she had PMDD. I took her to specialists, I took her to a bioidenticle hormone doctor, we tried everything. Many doctors do not even know what PMDD is. And most are just birth-control-pill worshipers. She has reached a point where her ovaries keep growing melon-sized cysts that have to be removed. She is a lump of sadness. She is in mental pain beyond description. She is not herself at all. She can not remember ever being happy nor picture life ever being happy. I have read many accounts where hysterectomy makes depression worse or sends a woman into a tail spin. We plan on having her on estrogren from day one and she is already on increased thyroid pills. Although everything points to hysterectomy being a cure it is a big scary risk and I’m kind of a coward. But since I don’t think her mental state can get any worse I figure we have nothing to lose. Her surgery is set for a week from today. Doc is taking out everything. It will either save her life or probably kill her. Your site is the ONLY site I have been able to find which actually explains how a hysterectomy has improved depression. But it makes sense to me. I just hope my wife has the same result. Thank you for having this site. I appreciate your opening up about your issues.
Thank you for your comment. My best wishes to your wife for her treatment, and you!
Dear Vincent, I am wondering if you wife did have her hysterectomy with ovaries removed , and I’d so how is she doing? I have a similar type of story and am considering surgery right now. I have not tried lupron and not sure I want to. I hope she is feeling better. Also wondering if she is taking hormone replacement?
CP
Sorry I did not reply sooner- I missed your post. It has been a year now since her H and her life is AMAZINGLY BETTER. HOLY FREAKING CRAP this is an answer to prayers! She is on HRT via patch (vivelledot) and premarin tabs. She was taking anti-depressants before her surgery and she is still taking them now. To explain how ridiculous this gyno industry is- I sat across from a fellowship trained UCLA doctor who told me my wife’s hormones were balanced (she had prescribed 3 bcps per month- that’s right 3!!) I explained that my wife was currently having her cycle and that her hormones could not be balanced. The doctor got upset and told me her hormones WERE balanced because she was on bcps!!!! I told the dr that it was physically impossible to have balanced hormones and menstruate. Its simply not possible to bleed without a shift in hormones. just not possible. Well I was talking to a wall. And I was right. Look- TRY the Lupron! Just do it! No woman should have the H without the Lupron. Use it as a non-invasive test. If it doesn’t help then forget the H. If it does help then get it. But if you really have PMDD then I bet you go insance for a month after the Lupron. Don’t freak out. Its a good thing. Hold on tight and wait it out. The same thing will happen after for a month after your H. The water calm after a month.
Hello, I am wondering if I can join your site? I am 32, had a total vaginal hysterectomy last year, but they didn’t take my ovaries at my request, so I am still producing hormones. Now I still suffer with PMDD and am about to start on GnRH analogues to “prove” that I have PMDD (even though I was diagnosed by a clinical professor reproductive endocrinologist). I am a little scared about the Zoladex and don’t know what to expect. I’m also a member of Hystersisters under the alias “Shrumi”. I’m finding trouble finding the relevant info online to find out what the expected symptoms of zoladex are, and how long it takes to stabilise, with the add-back HRT.
Hi I had an oophorectomy last month for pmdd, if I had known that I would have to take hrt with progesterone in I would have insisted on a full hysterectomy, the reason being that I feel like I still feel as if I have pmdd, feel so upset, its as if I’ve had the operation for nothing! Even my gp doesnt know why I wasn’t offered a full hysterectomy!
I’m 43, I would be very grateful for any advice please?
Kind regards
Lisa
Hi – I have a personal story to share concerning PMDD, progesterone intolerance, POS and fibroids, from screaming fits to a final relief by having oophorectomy / hysterectomy in November 2013 (6 weeks ago).
This site, after a quick look, is very much needed! (And looks good too!) These issues need to be made better known – attitudes need to be changed. Women need to know they don’t have to live with this torment!
It would be great to communicate with someone who’s “been there” and is of a similar age!
Best wishes, Verity.
Hi Verity, glad you’re feeling better. If you’d like to share your story as an anonymous post on this blog, please write it up and drop me another line here when you’re ready. Best wishes, Ms J&H
Hi I had an oophorectomy last month for pmdd, if I had known that I would have to take hrt with progesterone in I would have insisted on a full hysterectomy, the reason being that I feel like I still feel as if I have pmdd, feel so upset, its as if I’ve had the operation for nothing! Even my gp doesnt know why I wasn’t offered a full hysterectomy!
I’m 43, I would be very grateful for any advice please?
Kind regards
Lisa
Hi Lisa, that is odd you didn’t have your uterus taken out at the same time. If you have PMDD, as far as I’m aware, it’s the progesterone that’s the reactor (it was for me anyhow).
Have a look at Professor Studd’s website: http://www.studd.co.uk
When I read the information on the site, it was a revelation to me. Things all sarted to make sense as to why I was feeling so bad and why I collapsed after the GP prescribed a high dose of progesterone, for the supposed relief from PMDD.
I’d had enough of being messed around by the NHS and booked to see him. I should warn you in advance, his is a private clinic so the is a cost. Have a good read of the site, talk to you GP again (take relevant info from the site with you) and see what can be done on the NHS; otherwise go to Studd.
I hope something positive comes from reading info on Studd’s site.
Deepest sympathy – Verity
Hi! I am having trouble finding physicians in my area of the USA to treat PMDD with Lupron and/or oophrectomy. Do u know of any physicians in the US that are specialists in this area?
thank you!
Rebekah
Hello,
I am so happy to find your website. I am 47 and perimenopausal. I live in the US and the trebd is to treat with bio- identical progesterone – thanks to Oprah and others
I have tried this on two different occassions and the progesterone induces the worst PMS symptoms imaginable. They are debilitating. After reading your site I believe that I may have been progesterone intolerant all of these years. Where would I find advise on treating perimenopuasal symptoms for females who still have the unterus and ovaries.
Hi Corey, sorry for this very late reply. In the first instance, try the links on the right hand side of this blog, particularly John Studd and Nick Panay’s sites, and the Womens Moods book which is by authors in the US. You could try the clinic of the author of ‘The Female Brain’: http://brizlab.ucsf.edu/brizlab/wmhc.html
Great to have found your website and to see that you are helping us by answering our questions. Thank you!. At first I thought that there were no blogs after about Feb this year………….but having found my way around the site I found a November message reply. Most importantly you say you are now enjoying life which is great news – and really all I want to do. I’ve recently been to see Professor Studd, have a 30 year history of misdiagnosed PMDD. Was treated for years for Bipolar, but never improved. Am on the HRT from John Studd like you were, gels originally now just had an implant fitted by him. He has said a hysterectomy is the best treatment for me which i think I will go ahead with,. I am currently feeling really bad on the hormones, and am frightened as i have just started the 7 days of progesterone, which the last (and first) time I took them made me feel really bad and then the mood just hasn’t shifted. Can’t imagine feeling much worse than I am now. I am 47 and perimenopausal so that probably isn’t helping as it seems symptoms can deteriorate during this time. This whole thing is just so all-consuming, have you any advice for me in the run-up to the hysterectomy – it’s a confusing time, particularly as I have low mood and all the brain-altering negativity that comes with it. Did you say it was about 6 months from when you saw Prof Studd to when you had your op? Thank you!
Hi, I’ve replied to you in a new post.
Looking for some advice for hysterectomy can I be added to your face book page
Hi Corey. You could try Dr Annie Evans site. You could try a Mirena coil (an IUD with progestogen). All the best, Ms J&H