The run up to a hysterectomy for severe PMS / PMDD – general advice
by msjekyllhyde
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 there, I’m sorry you’re feeling awful, I feel for you. I don’t post much these days as I’m moving on (and PMDD now seems like a distant bad dream!), but I am here and am glad I can help a little by answering questions.
Here’s the timeline of how long the process took for me. Eventually I refused to take any progesterone as it took me so long to shake off the ensuing depression.
My advice for the run up to the hysterectomy is:
- Write down the pros and cons of the operation for you, refer back to it during moments of doubt and confusion.
- Write down ALL your feelings – writing helped me a great deal!
- Try to enlist the support of a good friend or relative who knows just how much PMDD has affected you.
- Read the excellent book ‘The Essential Guide to Hysterectomy‘ by Lauren F Streicher.
- Another book which I found very comforting is ‘Overcoming Depression‘ by Paul Gilbert.
- Do your pelvic floor exercises.
- If you are overweight, try to lose weight before the operation.
- Do not do internet research on hysterectomies at night or when you are feeling your worst – there are a number of sensationalist, scaremongering anti-op sites out there.
- I will send you a PM about an online group I’m a member of, for women who have had or are considering a hysterectomy for PMDD – it’s a tremendous comfort and extremely useful.
I wish you the very best of luck with your treatment!
Life after hysterectomy for PMDD / PMS [aged 35]. UK 
Hi,
I’m 27 and have been diagnosed at the age of 20 with severe PMS/PMDD. I have tried everything and the only thing that works is prostap and oestrogen add back. I’m on the list for a full hysterectomy, ovaries, cervix removal. Under a specialist in the north west area.
I’ve been stalled in having the op due to my age and apparent requirement to have children. I have made peace with my decision but would find it helpful to speak to other women who’ve been through this. Do you know of any groups / forums I could use to help me through this process?
Thank you so much for sharing your story. It’s so comforting to know you are not alone but sad that many women are suffering from this too.
I would like to be added to this group if possible. I am considering a hysterectomy for PMDD. My husband is against it but I dont know what else to do.
Thank goodness I found you all! I am currently in the process of organising a H but as I have to go private I need to find ways of managing this awful condition with Prof Studd until we have the money to pay for it. NHS has refused op. I too would love to source the online community that you have referred to…are you able to let me know?
Thank you
Hi, I’ve emailed you about the FB group.
I know this is a very old post but I am at the Ensor my rope and would love to know of a Facebook page for support as I navigate a TH/BSO in the near future. I have severe PMDD as well as miserable periods and chronic pain. Failed SSRIS, SNRIs, OCPs, and now with migraine w aura can’t take anything w estrogen (until menopause…they said physiological levels are safe even w aura). I can’t tolerate the progestin only pill and I just failed Mirena (expelled partially right before a week at a water park with the kids…gives new meaning to “shark week”…uh!
Thanks for sharing so much…I feel much more positive about what I need to do next.
Hi, did you find the group please? All I can find on facebook is the UK PMDD group, not the UK Full Hysterectomy group? thanks
Hi I wrote to you about a year ago for the private FB page. but decided to try the natural route to help with my pmdd symptons..THat has not worked..I’ve tried everything I can think of so here I am again thinking a hysterectomy is the only solution. Could you please send me the fb page again?
Thanks
Kim
Hi I would be really grateful if you could pm me details if the in-line group (unless it’s on Facebook as I am not on there).
Many thanks.
Hi! Could you also send me the info aboit the online group? I am having a hysterectomy for pmdd in the next few days and would love to “join the group!!”
Hi, I’ve emailed you. Best wishes for your recovery.
I’m having a hysterectomy in about a month as my last option for PMDD and I’d love to be a part of the online group I’ve heard you refer to on this site. Would love if you coule shoot me an email so I can join!
You said you would pm another person about an online group that was extremely helpful for PMDD sufferers that want or have had a hysterectomy so please send me the group info too,please?
Thank you,
Debra
Done 🙂
Hey, I am trying to get my doc on side to agree to a hysterectomy & removal of my ovaries. Have found reading through your site some really great positive stories.
Wondering if you could please forward on the facebook group please.
I’m interested in this group as well. I’m hoping to have one done some time in early 2016. I wish it could be earlier but I’m waiting to try and have my last child before I do it.
I’m having a hysterectomy in about a month as my last option for PMDD and I’d love to be a part of the online group I’ve heard you refer to on this site. Would love if you coule shoot me an email so I can join!
Your site has been a godsend with loads of info and honest opinions about PMDD. Thank you!!
Noting here that I emailed you in Nov.
Please PM me w the information you sent the previous inquiry. I am 38 years old & I have also been diagnosed with bp. My anxiety & depression maximize 2 weeks before my period. With all the symptoms, I am lucky to have a good week or two each month. It is very debilitating. I use I variety of techniques to combat it naturally: CBT, mindfulness, rest, exercise, deep breathing,distraction, counseling, PLUS medication. The anxiety gets so bad I just want to make it stop, at any cost. And, the depression is also debilitating. Looking for a true and lasting solution.
One last challenge is that I don’t have health insurance. Do you know of any studies by the mayo clinic or another university I my qualify for.
Desperately seeking an answer.
Gina
Hi Gina, I’ve PM’d you about the support group.
I don’t know the answer to your question, but someone in the group may be able to help.
Ms Jekyll & Hyde
I’m new here, I am wanting to know if I can join the online support group as well, I am scheduled for my hysterectomy on October 2, 2013. I would really like some more insight.. Thanks!
Noting here that I messaged you in Sept.
I had my hysterectomy on christmas eve 2012
Reading your stories is just like a mirror of my own. It’s very sad.
I don’t feel any better at all. In fact I feel worse. I feel like I have made the most terrible mistake and I want my womb and ovaries back.
I threw my wedding ring out the car window yesterday as my husband was taking me to get me locked away. They didn’t lock me away, they laughed at him.
Hi Lisa, I’m sorry you’re feeling awful. I hope you’ll join the online support group I’ve PM’d you about, or join one of the hysterectomy forums (see the links on the right hand side of this blog).
Your operation wasn’t long ago at all, you are very tired no doubt, due to the healing process, which is normal. This, combined with the hormonal changes, are bound to make you feel lousy at this time. Please get as much rest as possible, and talk to your doctor. I hope you feel better soon.
Sorry to hear that you are feeling so low. I’m currently considering what to do and I wondered, did you have the GnRH analogues and put back HRT prior to the hysterectomy? Did you feel ok then? I was wondering if they have now changed your HRT and whether this a storm you have to get through but it will level out? Hope you feel better soon
Did it cute pmdd?
As well, can I please get the name of the group you mentioned? It would be very helpful.
Hi Joanna, I’ll send you a PM about the group.
I am astounded to have found this blog and to read that there are other people as debilitated by PMDD as I am. I am 38, diagnosed with Bipolar I (the rapid cycling) and I have long been suffering because of my menstrual cycle. I have moaned and complained for almost 20 years and I have had it. I have literally tried everything. Every drug, every hormone, every vitamin in every combination and nothing works. I am at my wits end with this. I developed a terrible addiction to Benzodiazepines because of this but have now been drug free for almost 2 years. Benzos nearly ruined my life. I want my life back. I can’t even imagine what good I could do without feeling insane 2 weeks out of every month. My greates fear is that I will be trading one demonic problem I know, with one I don’t…… If anyone feels better because of hysterectomy, please post. I need a solution. I can’t take any more of this. Thanks Joanna
Hello, I am going down a very similar path with my pms/pmdd. I am 32 years old and am going to be starting Lupron to relieve my ovaries of their duties to see if a hysterectomy would solve my problems. My question is one that i am getting very mixed answers about……My main concern after the hysterectomy is my sex life with my husband. I have been told in many cases that a woman with a FULL hysterectomy simply can not orgasm! My husband and I are very active in this department when I am felling well…is this true? What has your experience been in this department? Thank you for any help, i have come really found peace witht he thought of having this procedure but this one thing is really holding me up.
Hi Liz, I’ve replied to you in a new post.