Yes, I’m still here :) ..and I’m very well!
by msjekyllhyde
Hi, a note so that you know I am still here. I now log-in only intermittently to approve comments (thank you for your kind words about this blog) – because I don’t want to think about these topics every day, now that they are like a distant bad dream!
It’s now been around 2 years and 6 months since the hysterectomy for PMDD. I’m now 38. Nearly every day I give thanks for my balanced mental state.
Here’s how I’m getting on:
- I choose to have 6 monthly HRT implants of estrogen and testosterone. These work well for me, as I can forget about it. The implants are inserted into my buttock (or stomach if one prefers).
- The 5 minute procedure is only very slightly uncomfortable, local anaesthetic is given, and a stitch or two. As I’m in the UK, I get these on the NHS – I pay 2 x prescription charges.
- Once I feel the implants wearing off, at around 5 and a half months, I use HRT gels (applied to the skin), until the new implants kick in. I get the gels on prescription.
- I have to get a blood test done 10 days before each new set of implants, to check that my hormone levels have dropped. As I’m in the UK, I don’t pay for this. This is done by either the nurse at my GP surgery, or at a drop-in clinic at the hospital where I have the implants.
- I choose to take 10mg of citalopram daily (an SSRI anti-depressant), I break the tablet in half and take 5mg in the morning, and 5mg in the afternoon.
- I’m taking it because I read in an excellent book about depression, ‘Depressive Illness, The Curse of the Strong‘ by Dr. Tim Cantopher, that if one has had severe mood swings / depression, it could be useful to reset serotonin levels by taking an SSRI for a long period of around a year (note: the UK’s NHS now suggest a 2 year period).
- I have to break the tablet in half, as 10mg is the lowest dose available to me. This dose is usually prescribed for anxiety. (Note: in the UK, the NHS will usually prescribe 20mg for depression, as a start – this was too much for me).
- I’ve experimented with the dose, and I feel great on this amount. I figured this out myself.
- I am a highly creative person (including professionally), and my creativity is not stifled / reduced on this dose. I once feared it might be on an SSRI, and I think it would be if I took over 10mg daily.
- If / when I try stopping the citalopram, I’ll post here about how this works out.
I don’t drink alcohol at all. I now rarely miss it. I gave it up completely as I found that even say half a glass of wine had a negative impact on my mood, the next day. Looking back, I would have been wise to have given it up completely in my 20’s, in terms of it worsening my PMDD symptoms.
In the last six months I have massively improved my diet.
- In the throes of PMDD, I couldn’t always envisage myself wanting to live long enough to make it into old age. But post-op I can, and I want this body to last me as long as possible!
- I attend Weight Watchers nearly every week (and stay to the meeting) – this works very well for me, and I’ve lost over 2 stone. It hasn’t been a big battle this time, as post-op, I very rarely have all-consuming urges to binge on chocolate and sweet carbs.
- I have never felt better in my body than I do at this weight, it’s an absolute joy! And adds to my happiness.
- I am the slimmest I’ve been since I was twelve (note: I started my periods aged twelve).
- The weight loss has made me look younger and of course fitter, which is great. I felt very frumpy for a while after the hysterectomy, perhaps because I hadn’t yet come to terms with my new state.
- My interest in clothes is completely re-ignited. I’ve given bags and bags of now-too-big clothes to friends/charity.
- My BMI is within the (very) healthy range.
- My over-eating was emotional / comfort / boredom related. Now I eat mindfully.
- I’ve bought a Nutri Bullet blender, so I can make juices and smoothies. I’ve never owned something like this before, I cannot recommend this product highly enough! No, I’m not on commission 😉
I send you my best wishes if you are struggling with depression, particularly hormone-related depression / PMDD.
(Updated 9 Dec 2014)
Life after hysterectomy for PMDD / PMS [aged 35]. UK 
Well, I’ve just gone through with mine. Your story was so similar to my own that I decided I couldn’t do it any more and had everything removed.
I’m in week four of my recovery and at the moment I don’t feel very good (I had to recover pretty much on my own, fell out with my parents, noisy neighbours causing problems…you name it!) but I have a feeling that once everything has settled down I will feel so much better. I had terrible pains in my uterus and ovaries every morning for a start, and that can’t happen any more, so I should be able to exercise without pain. That on its own might well help significantly but If the operation sorts my moods out even 50% on top of that, this will be the best thing I ever did.
I am also in a position of re-evaluating my job, where I live, how I live and so on. At the moment it is all a bit much but after the physical recovery is over, who knows!! I don’t drink alcohol either and have always found issues with that so the idea of trying to find somewhere that I am accepted for not having children or drinking is a really interesting one.
Thank you so much for sharing your experience, as it has helped to form mine. I wish I could be in touch with some of the people commenting on here – it’s such a huge thing to find I am not alone!!
Hi Jenny, I’ve sent you an invite to the facebook group. Best wishes for your recovery, and happy new year!
I have suffered for twenty years and I’m about to lose my marriage over PMDD. You still have your ovaries? I can’t join your facebook page, because my husband won’t let me have an account. I’m ready to get something done. I’ve tried everything. I would like to visit with you via e-mail if you don’t mind. You are a ray of inspiration. God Bless you!
Hi Jenny. A few weeks ago I sent you a Facebook invite to a ‘secret’ group for those in our boat. Best wishes for your recovery.
Please can I join the Facebook group
Hey just wondering what dose of estrogen people found to work? I am finding it difficult to find info regarding this to bring to my Gyny. Ive a good doctor but i feel like i need to have up to date info before going to appointments to make them worthwhile. Im afraid my estrogen either hasnt kicked in yet or i am on too low a dose.
Thanks.
Can I please join the facebook group? I’m struggling to keep my hopes up right now as I can’t find anything to help my PMDD 😦
Hi, invite sent.
This blog is blowing my mind. I knew that this complete takeover of my life for half of every month is not “normal”. Reading about others that experience this makes me want to cry with relief. Just knowing it’s not just in my head…
Will you add me this Facebook group?
Hi, I’ve just sent you a Facebook invite
Hello, after years of suffering from PMDD I visited Professor Studd, the first three months on his regime were amazing. However, when I had to add in the progesterone it was 7 days of extreme tiredness and looking 6 months pregnant not to mention the 7 days of rage and mood swings.
I have just been promoted at work 3 months ago, it’s a stressful position and I am also a single mother so I feel I can’t subject my poor daughter or new work colleagues to any more rage.
I had a follow up appointment due on 8th October but had to reschedule to the 21st. I have my brothers wedding and a lot of projects with tight deadlines at work. I have already made my mind up I am not going to take the progesterone this month. I know that this is required when you take estrogen but I simply can’t face it.
Hi Vicki
I m new on here and going through the same hell with progesterone as you are. I would love to know how you are doing. I m thinking of going to see Prf Studd but as it would be a major expense for me I am just not sure if it will be worth it. I would love to hear from you.
It’s definitely worth seeing the Professor if you can. I’ve been on his regime for the last 6 months and like Vicki the first 3 months were fabulous. With addition of progesterone, and I went downhill. I’m not taking the progesterone this month by my own progesterone seems to be attacking me now so I’m not sure what to do. However I will be speaking to the Professor soon I hope so fingers crossed.
Just found your wonderful blog and I’m in floods of tears reading it, happy and sad. I know I’m deep in pre-menstrual fog right now but it feels so good to know there’s people out there like me and I’m not going completely crazy (yet). I’m only 38 and feel like my life is over some days, and I’m missing out, and have already missed out on so much time with my children.
Please please could you give me further details of the Facebook group and other other good sources of support, especially those in the UK.
Thank you for writing this.
I’m 33years old have suffered with PMDD for over 20 years. Have never had children. Suppose to get 1st decapeptyl injection on Monday. Very scared about it. Would love to join fb group. Many thanks.
Hello, how did the injections go how did you feel?
Hi! I am in the same boat as all y’all sweet ladies still fighting the PMDD. I need help! Can you please add me to the FB page? I think it will really be helpful!
Holly
I’ve emailed you about the FB group.
Please could you add me to your fb group. Going crazy 😞
Hi, FB invite sent
Hello, I would love to be added to the FB group too please. Ive been a PMDD sufferer for over 20 years I reckon, and seems to have got worse since having children. I had 2 bouts of PND after both my boys and although that seems to have calmed down with HRT, I now find myself back in the PMDD cycle of 2 weeks feeling ok and 2 weeks feeling terrible mentally. I feel like life is slipping away and I want to enjoy my family life and boys but the struggle is too hard.
I am seeing my gyno/endocrinologist next week (privately and self funded as NHS won’t treat me, although they do pay for my prescriptions for patches, tabs, gels, pessaries). I want to ask her about hysterectomy and would ideally like to go through NHS but felt belittled before at doctors. I’m 42 this year and after staring periods at 11 I feel (finally) like I deserve a better life, and reading all these posts are so reassuring and helpful.
So much more I could ramble on about, but would be great to be part of the chats on FB group.
Thanks to you all for sharing your stories. It really does help 🙂
B
Hello. I’ve been suffering with pmdd for about 20 years. It doesn’t help that I have OCD which goes from moderate to severe during the second half of my cycle. I had my tubes tied 10 months ago when my youngest was born and I had NO IDEA my pmdd would get worse. It’s to the point that I’m desperate for my ovaries to be out but no doctors will listen to me. I’m 35 so that is what is stopping them. I’m struggling and having a very hard time coping.
Long story short is it possible to be added to the Facebook group? I need help and support
Thanks so much
Steph
I’d also like to join the facebook group. 11 months post TAH-BSO and just had an oestrogen implant…
Hi, I have had chills reading your blog and gotten very emotional because I feel like I could have written it (the pre-stuff anyway)…I very much want to end it all 12 times a year at least, and like most of you, I am completed debilitated for at least half the month. Borderline-psychotic depression, severe anxiety, horrible mood swings where I can barely tolerate myself. I’m 27 and in nursing school full-time, but I am at the point where I’m doubting if I can continue because of how awful it gets. I have fibromyalgia as well, so the 8-10 lbs of water weight I gain each month puts a lot of pressure on my trigger points (painful areas). I want so badly to have a biological child but I don’t think I can do this any longer. I can’t keep have this jeopardize my life. Does your facebook group still exist? I would love to be added because I think I’m going to need a lot of support after I get my consult for hysterectomy next week.
Hi, confirming I’ve emailed you about the FB group.
hi Im about to have this procedure tomorrow! I would like to be added to the FB group too.. hope you’re still reading this
Hi, yes I am, have emailed you about the FB group.
I am sitting in my car crying as I read your posts. I have PMDD and I suffer every month for at least 15 days with detrimental mood issues. I am a monster during the 2 weeks. I just want to die. I hate very thing and everyone. I am going to see my doctor to ask for a solution although I know I will meet resistance. Please let me know how things are with you now. Things have gotten worse as I have gotten older and had kids. My life is a misery. Thanks for posting about this
Hi Wendy, a quick note for now to let you know that I am very well. There is a secret Facebook support group that may be a comfort for you, let me know if you’d like me to add you.
I would love to be added to this secret Facebook support group. I am scheduled to have my hysto on 12/8/15. I too suffer from PMDD as well as endo. I am counting the days until I find relief I hope.
I can so relate to Wendy and this post. I have put my life on hold thinking i would have kids, now 47, so emotionally messed up with PMDD, i can’t take it anymore and i do not want kids anymore. I have finally moved on, time for the hysterectomy. I just got health insurance and a few years ago, it was the conversation in my doctors office. I was an egg donor a long time ago and when they put me on lupron, suppressing my hormones, i felt GOOD. I think it is a shame that we have to suffer. This last month, i stayed in bed a week, i could barely move my body, my boobs hurt so bad i had to carry them around, swollen and i wanted to eat everything in site. I get my period and like magic, the torture goes away for a week or so. Amazing, they can’t find a dang cure for this. Can you send me an invite to that group or tell me the name of the FB group? I keep this stuff private from my “friends” on fb.
Hi, confirming I’ve emailed you about the FB group.
I would also really appreciate being added to this group if possible?
Hi, confirming I’ve emailed you about the FB group.
Thank you x
I just came across your page as I’m coming into yet another 2 weeks of “anti-me”. I’ve recently started oral contraceptives as hormone therapy and a low does SSRI during my luteal phase, but I have been suffering for so long, so severely, I don’t know how much more I – or my fiance – can take. Have thought about surgery occassionally for years, but think it might be the next right step. I would truly appreciate being added to the FB group.
Thank you.
I’ve emailed you about the FB group.
Hi msjekyllhyde
Been reading all your posts-please please add me to your FB page as I am desperate.
Thank you
Tami
Hi, I’ve emailed you.
Hi Ms J&H
Hope you are well. I am having my hysterectomy and BSO tomorrow. I am interested in the implants you have but have read that the testosterone implants have been discontinued, is that correct?
Should I be able to ask for these on the NHS still along with oestrogen implants?
Many thanks.
Lou
Hi, yes I’ve been told that the testo implants are currently unavailable on the NHS. So you should ask for sachets of Testogel (on the NHS). I’ve been advised to use one sachet over 1 week, each week. Hope your op went well.
Thanks for your reply. I have been told I can’t get the oestrogen implants on NHS too or certainly not in my area (South West). Can you still get them on the NHS in London?
Thanks
Lou
I’m in the South of England, and I get oestrogen implants on the NHS – they are fobbing you off! Sounds like you need to write a stiff letter to your GP about this, outlining just how awful you feel, and the possible consequences of this. They will be MUCH more inclined to help you, if you lay it all out in a letter (it’s much harder for them to ignore / it’s filed). Change GP surgery if necessary. I wrote a previous post about writing to my GP.
Hi thanks for replying. My GP has actually phoned around the local hospitals & been told they don’t do the oestrogen implants anymore. I can’t seem to find any further info. on this online. I can get them privately in Bristol but would cost of cost me over £200 Inc. consultation! So it looks like some are providing and some aren’t. I asked one at time of hysterectomy and was told they didn’t have them.
Professor John Studd was on women’s hour this week – catch it here: http://www.bbc.co.uk/programmes/b062kdd1
I am finally having the op on Monday (18 May) (fingers crossed) nhs are sending me private as I am way over the 18 week deadline.
Am I going to be a new person? I really hope so.
Hi there, how did it go? Hope you are well. I am still waiting for date. Just had 7th Zoladex jab today. Getting impatient! Had a couple of really good months then this month, the jab seemed to burn out early and I got all the symptoms back along with a period. Really hope everything went well and you are recovering OK. Lou
Thanks for asking Lou, I appealed to the nhs constitution for my operation as I was frustrated with wait. This meant my op happened in a different county with a surgeon unconnected to my case which has had the obvious downsides.
I am day 15 now.
I just was not prepared for coming round from the general anaesthetic. It was in my case unbelievably painful and the hospital were very slow with dishing out painkillers despite my protestations. They pump you up with gas to do the op, so my stomach was huge like a Swiss ball for several days. The nightshirt I had bought specially for hospital (baggy, cushy) didn’t fit over my stomach! I was discharged on day 3, and felt happy to leave but the 2 hour car journey home was awful. My partner found the first few days with me home very difficult and I think he felt quite overwhelmed.
A week or so in, I started bleeding which was very alarming, especially being so far from hospital, again just don’t feel I was given the information to understand what to expect. But have been assured that the bleeding I have is fine. I have also had some absolutely vicious night sweats, the washing machine is on day in, day out, I am now making progress with hrt, and hopefully they are getting better.
Recovery is definitely a slow process, it’s so easy to knock your pipe out.
Now to the good bits!
It’s done, it’s done, it’s done.
The nagging lower back pain I have had forever has disappeared 🙂
I’m looking forward to living a full life post recovery!
Hi Djangobean
Firstly so sorry this reply is only getting to you today, I actually only got your reply today but see you sent it on 2nd June so I can only guess that it’s been awaiting authorisation.
It sounds like you have had a really rough time of it. Pleased to hear that you are relieved it is done though.
Now another couple of weeks have passed, how are you feeling? If you are still struggling with the sweats, maybe try some different hrt? For me personally, the gel didn’t work, I am now taking tablets and will re-think again once I have had the op.
Well….I have my date and am going in on Monday (22nd) so less than a week away! I am really pleased but up and down emotions this week which I guess is normal. I just am so scared that it gets cancelled at the last minute so feel in a sort of limbo until I am down in theatre! 🙂
Keep in touch and I really hope that you are feeling much, much better. It’s hard to know what to expect as everyone seems to have very different experiences and recovery times.
Best wishes,
Lou x
Hi Lou
Day 29 and much better. I have just discovered the hyster sisters website and find their daily checkpoints and forums very helpful.
Also I have just acquired a pair of dungarees (Top tip!).
Night sweats are better, I might switch to a patch with a little gel in a couple of weeks if I want to try something different.
All the best for your op, make sure you have clothing that will fit, wet wipes and don’t get discharged without knowing what to expect in terms of bleeding, discomfort, discharge, wound management, pain relief (and effects of). I personally was in a very bad place for several weeks, but other people have a very different experience.
My histology came back that I had some fibroids and adenomyosis too, so operation justified 3 times over now.
Let us know how you go x
So pleased to hear that you are on the mend and over the worst. Thanks for the tips. I have also jointed Hysterectomy Association Forum which is really good to share experiences and concerns.
Funny I did think about getting some dungarees. Think July may be hot so am planning on very loose maxi dresses hopefully!
Take care of yourself and hopefully you can start enjoying life again very soon. 🙂 x
Hi Djangobean, how are you now after recovery? I am doing well apart from my hrt isn’t stopping aches & dryness. I don’t know whether to try an implant. Hope you are well.
Hi Lou
I’m struggling with op recovery. 10 weeks and I still have stomach like a bowling ball. Possible adhesions and haematoma 😦 waiting for a scan. I’m getting strict with my diet again now as alcohol and caffeine obviously won’t help.
I’ve also weirdly felt like I’ve had Pms this week. Snappy, agitated etc. but I have started doing a couple of hours work here and there – just very tired.
Glad all improving for you.
I’m happy with oestrogen gel and not looking for testosterone as yet.
Woo hoo
I don’t have night sweats anymore though 🙂
Hi sorry you are struggling, it is a slow healing process. Glad the sweats have stopped.
I have been pretty rough trying to balance hurt too but I will get there. Six weeks for me & still wiped out & achy! Had a touch of pms type stuff too but think it’s just getting the hrt right, healing & stopping Zoladex.
Thanks for the Women’s Hour link.
Take care x
Hello,
I just want to say thank you for sharing your story. I can’t tell you how grateful i am to have read about what you went through, as I have been struggling with severe PMDD and extremely painful, heavy periods for nearly two decades. I’m 41 years old and over the last 5-6 years I’ve completely lost control over my life. The depression has led to suicidal thoughts many times. My doctors said hysterectomy wasn’t the answer and put me on various anti-depressants, including lithium ( which made my hair fall out- not the best thing for a depressed woman), but none of the meds consistently worked. I really feel like Jekyll & Hyde. Now after reading your blog I’m going to go see my doctor and insist that a hysterectomy be seriously considered as an option for me. I relate so strongly to nearly everything you said you’ve gone through its almost a though I’d written it myself lol I have tears of joy knowing I’m not alone and that there is a chance I could get my life back and become once again the happy creative and productive person I used to be. Thank you sooooooo much! Reading your blog has inspired me to the point where it could quite possibly save my life! I wish you all the best and thank you!!
Gratefully,
Canadian Girl 🙂
Hi
Thank you for sharing your journey it is almost exactly the same as my mine!
I have just been given a date for a full hysterectomy after many years of PMDD which became even worse with Peri menopause 2 years ago. I am currently on HRT and know that after the op I will have to find the correct dosage again…the oestrogen/testosterone implant so far has worked the best but I have just been told the implant will no longer include testosterone this worries me as the gels have not worked for me in the past.
I hope to be in a better place soon and take great comfort from your articles….
Hello HansonBoutique, I would like to ask you which PMDD symptoms you found most disabling and that caused you to decide to proceed with a total hysterectomy? I have decided on this now too and want to cross reference other women’s experiences and severity of symptoms that prompted this decision. For me, it is the magnitude of the low moods and loss of self control and how these have impacted my relationships. Also, I share in your experience of worsening symptoms with peri-menopause.
Hello Jan
Apologies for late reply but I am very rarely on here and don’t receive notifications!! (hansonboutique@hotmail.co.uk)
I hope you are well and have been able to get feedback to help you get more of an insight in to the hysterectomy route option.
Where do I start with PMDD and the last 36 years? I can only describe my symptoms as living in a horror film only I couldn’t turn it off when I was scared.
Early years 14- 24 were the typical monthly cycle symptoms, episodes of aggression, depression, tears, sadness,binge eating, high and low moods, excessive talking to isolating myself.
Birth of my first child, 25 years…PND, Therapy, anti-depressants and PMDD on a different level. This time added to the above symptoms I had unwanted thoughts of self harming or harming my baby, over thinking, OCD, panic and anxiety attacks, claustrophobia, agoraphobia and social anxiety.
Peri Menopause, 47 years Mental breakdown after 3 years on various anti depressants for panic and anxiety, claustrophobia etc
Finally referred to a menopause clinic after a chance assessment for vulva psoriasis!!!
After numerous trials and errors with medication for HRT under the clinic and still having PMDD symptoms (I am severely intolerant to progesterone) I saw a private Gynaecologist (Proff John Studd) where I had a full biochemical screening and was assured that I was NOT mad and my diagnosis of Peri Menopause and PMDD was given. It was explained that a hysterectomy was my best option as my symptoms are endocrine…
So here I am hoping to have my hysterectomy on the 10th June however this depends on the outcome of a biopsy I had yesterday to see if I have any cancer due the length of time it has taken to get my op while taking oestrogens without progesterone which causes Endometrial Cancer.
I know the op is right for me as since my ovarian fucntion has been suppressed by medication the past 12 months I have been in a lift, travelled on a tube on my own drove my car on my own without panic attacks and have accepted social invitations, I had not been on a tube or in a lift in over 6 years!
I can honestly say Jan I have always been held back by my hormones whether this be in my career or relationships with a partner, friend or family member, it is the most debilitating experience in my life, you can’t see it, or even explain it unless the person you are talking to about it has experienced something similar, it is saddening and isolating and worst of all has stripped me of a carefree attitude to living but instead given me a fearful one.
Best wishes
Tracey
Hi I just happened to stumble upon this blog and find it great that I am not going mad! I am 42 years old, married with no children( my own choice) and my pmt symptons are ruining my life… I experience maybe one week free of all symptons and then it all starts… my period is now the normal three days late and I am so bloated that no bras will fit along with most of my clothes… I jumped on the scales on Friday and read my weight at 8.13 today I am 9.11… my mood is dreadful and its affecting my marriage… my face is covered in breakouts and I don’t want to leave my home… thankfully I am on holidays from work! I have tried every thing natural I could source… my doctor prescribed the pill last year which made me dizzy and sick… so into the bin they went… I cry for nothing say the cruelest things to my husband… I hate myself…. can anyone help??? Xx
It sounds like you’ve come to the right place, Dot. Ms. Jekyll and Hyde’s blog has a lot of candid information about PMDD, which is likely what you suffer from. Some of the comments on this post discuss different treatments that women have tried. Some have been quite successful.
I encourage you to broach this subject with your doctor. Maybe try the cycle-suppressing drugs and see if you achieve equilibrium on HRT.
I ended up having a hysterectomy/BSO to cure my PMDD, and it worked. I am still figuring out HRT, but even with that, life is so much better than it was before. As long as I have sufficient rest and food, my moods are steady and positive.
Best of luck to you. It may take some time, but there are some things you can try.
Hi Dot, if you keep a diary and then chat to your GP, there are options to try. Sometimes the mirena coil and oestrogen hrt works. It didn’t for me but does for some. I am now on the list for a full hysterectomy and ovary removal. I am currently on zoladex but having mixed results with it for the physical symptoms, I think it’s a case of balancing the hrt. I can totally relate to the bloating and weight gain and having one good week a month! Would you consider surgery? I too have had no joy with various birth control pills and believe that progesterone is my main problem and seems to cause most women with pms/pmdd problems. Good luck x
Hi Dot,
You don’t have to live this way. If your symptoms are this intense, then you should consider surgery to save yourself and your husband a lot of heartache. After a certain amount of abuse, even the most loving of husbands will leave. Life is too short for you or him to live this way. Don’t be a victim of this disease. Rise up and take control of your life and make a tough decision to save the rest of your life.
Thank you so much for sharing your experiences. This really is helping me feel less scared about making the decision for a full hysterectomy & ovary removal.
Are you planning on a New Year update? I keep checking in just in case 😊
If you don’t mind me asking, did you ever try or consider trying Tiboline with a view to possibly just having ovaries out? I am on second month of Zoladex & have never felt better. I just can’t decide whether to try this or just get on the waiting list for hysto & stay on oestrogen only. BC pills were a nightmare & progesterone does seem to make me ill physically & emotionally.
Any readers out there had any success with Tiboline when they couldn’t tolerate progesterones?
I’ve not heard of tiboline? I’m waiting for hyst and ooph and tube op now – hopefully by april!
I had three months of one months zoladex which was bliss apart from the aches and pains which i was told to up oestrogel gel to counter.
Now end of one month on 3 month long zoladex. No aches and pains but bleeding and less mood control. If the op is much delayed I will be asking to go back to the one month implants.
Hi, Tibolone is a steroid type hrt which doesn’t actually provide hormones but acts on receptors in our bodies I think to provide the necessary oestrogen, progesterone and testosterone.
Good luck with the op and keep us updated to your progress.
How a few days can make a difference…since the weekend I have felt utterly dreadful, severe joint pains, periody, feel sick, hot flushes and almost like restless legs – just feel really unwell. Did you have a bad crash before it got better? I have increased oestrogen in the hope this helps but no joy yet. What dose of oestrogen were you taking and I presume you avoided progesterone?
Glad you have had some success.
I always felt awful a couple of days after 1 month zoladex injection, then a week later awesome, then the aches and pains would hit. 6 pumps of oestrodose a day was what I was told to use.
Progesterone lost me my job, 7 months signed off sick while they tried qlaira et al, then I was made redundant. Since zoladex I have been able to work again 🙂
Best for you
I am surprised I am holding down my job too! It’s great that the Zoladex is helping you 🙂
Would you say that the higher dose of oestrogen has got rid of the aches and pains now then?
I have just upped my dose again as the pain was horrendous.
Fingers crossed it’s just not enough oestrogen!
One minute I think yes that’s all it is and after a hysterectomy I will be fine and the next I worry that nothing is going to work! The crazy thing is Qlaira and other pills with progesterone had a relaxing effect on my muscles so I would get muscle pains and acid reflux (along with the moods etc).
Do you know what 6 pumps of oestrogen equates to?
Sorry for all the questions!
Hi there, any more news on your op? I am feeling very confused as I have had a few days of bad pms this month despite being on Zoladex. I felt really ill and then found out my estradiol levels were far too low so have switched to oral oestrogen 2mg and not feeling great just yet. I then start doubting the hysterectomy will work as I struggle to balance hrt but the surely the Zoladex itself can make us feel grotty?
Hope you are doing OK.
No date, but have had all pre op tests (ecg, bloods etc.). thanks for asking
Not a fan of 3 month zoladex, I’ve been bleeding for 5 weeks and have torrential night sweats again. Doctors not interested as all waiting for op to cure everything – I do have doubts. But no other treatments to try so I will give it a go…
Hopefully you will get a date soon then. That doesn’t sound great for you, sounds like your oestrogel may not be working properly either. Yeah that’s what I keep thinking about…if I don’t do this, what else is there to try…nothing! If I know I can find a hrt that works I am not too worried but have been on these new tablets 2mg for a week now and still got all the joint pains, zero energy, feeling ‘hungover’ etc. It’s a minefield really isn’t it! Good luck and let me know how it all goes.
I think I have Pmdd after over 10yrs of treatment for bi-polar. Ive had an abalation to stop my heavy periods 3yrs ago and it was successful. I have a small fibroid and cysts. They have offered a hysterectomy but i refused… Because im scared. Im scared of getting even fatter. Of aging. Of then hrt. I need to know, did you put weight on and is your pmdd gone? I live in uk and 42yrs. Im so confused xx
Hi San
I am also considering a hysterectomy.
From what I have read, the weight gain is only initially in the recovery time when you are less active. I don’t think there is any firm evidence that hysterectomy or hrt causes weight gain, I think it is a combination of things.
Good luck with your decision.
I am afraid of the weight gain quite a bit (I’ve suffered from anorexia for most of my life). I have heard it would only be from inactivity as well (as in it likely doesn’t change your metabolism) but I could be wrong. I am thinking of having one this year (I’m 27, no kids).
Hello! I wanted to say its been amazing to read your journey through your treatment. I met Nick Panay in 2008 and have been under him ever since. I have chosen the mirena, decapeptyl and estrogen implant route which has worked well for me i am now fully symptomless. I wanted to comment on the positive outcome mentally because until i had my treatment i never knew what it felt like to feel free and to have my mind back or should i say to just have my mind.
I struggle greatly with weightloss after my treatment again similar to you i dropped 2 stone without trying weird how our hormones attack our wasteline armed with malteasers and galaxy caramel.
Anyhow i wish you a blessed Christmas,
and all the best for the future.
Kind Regards,
KH
I’m pre potential op, at the moment only an oophorectomy is being suggested, but I’m finding bc pills are really distressing in terms of moods, so not happy about progesterone. Currently on Qlaira, last month was Zoley…
Anyway in the meantime I am doing the Hormone Diet by Natasha Turner, and have managed to loose some weight and my food cravings are very controllable which is amazing.
Thank you for sharing your experiences and adding updates. Your site has been extremely informative and it’s encouraging to know that there can be a solution for PMDD sufferers.
I’ve had PMDD for many years, but only recently realized what it is and noted that it follows my cycles. I have tried antidepressants, birth control pills, diet, and exercise. These had some positive impacts, but the PMDD always comes back. I’ve seen two gynecologists, and both are willing to perform a total hysterectomy and remove both ovaries. There are some other factors involved that were revealed during lab tests and ultrasound, but the bottom line is that PMDD makes me miserable. It has a negative impact on every aspect of my life. I live in a constant cycle of a few days of feeling decent, two days of feeling good, about two weeks of PMDD, followed by wretched, miserable periods. If I’m lucky, I have a week to pick up the pieces before it starts all over again. It’s no way to live. Surgery comes with no guarantees, but it is the only thing that makes me feel hopeful.
Thanks again, Ms. Jekyll. It appears that Ms Hyde is long gone, and I am glad to read your success story.
Hi Rachel,
Just wanted to see how things turned out for you and if you decided to have the surgery?
Hi Jan, I just saw your response. I had the surgery in late October of 2014. The PMDD is gone and my emotions are leveling out. The tranquility was unnerving at first, but I’ve gotten used to it. There are still some bad days, but those can be remedied because the causes tend to be lack of sleep or food. PMDD apparently had me in a constant state of anxiety, with maybe two days per month where I felt okay. It has taken some time to decompress, but life is better now.
I have occasional fears about the long-term effects of having my ovaries removed, but I would still do it over again if I had the choice. My quality of life is greatly improved.
Hope that helps.
Rachel
i wanted to say thank you so much for this blog — i think discovering it last year may have saved my life (although currently right now i’m in a stage where it doesn’t feel like that matters). i am currently wrestling with the nhs (dr. p’s clinic!), struggling to get them to find something that works for me. i have tried birth control and now am on estrogen patches and progesterone (via mirena) — progesterone tablets destroyed my skin (horrible eczema) and then i was told to try mirena for a lower dose (which is now giving me horrible acne, further depressing me/making me anxious) with synarel. showed them your blog asking for something similar without any progesterone, as you had, and they have refused (in theory they may rethink in a couple of months but honestly i have so little hope that they’ll help me anymore). i can’t imagine how i would even be navigating this had i not seen your blog.
ps. also it’s all right to not approve this comment if you’re nervous about my specific comments being made public! really it’s just more important that you know how grateful i am that you blogged about this stuff.