Life after hysterectomy for PMDD / PMS [aged 35]. UK

Life after a hysterectomy for PMDD / severe PMS, aged 35. It's vital that BOTH OVARIES are removed. Yes, it worked!! I am a strong advocate of HRT.

Month: January, 2013

‘Pissed about politics being jammed up MY damn uterus’

Gale, who lives in America’s conservative South, shared her story here in 2012, by commenting on a couple of previous posts. I want to draw attention to it, since she raises many interesting points about the politics surrounding women’s reproductive health.

First message from Gale, June 2012:

If you don’t mind my asking, how did you manage to get your doctor to give you the surgery? I’m a 22 year old woman who has been wanting this surgery for more than a decade for many of the exact same reasons you’ve listed (and some more besides), but as far as I’ve ever been able to research, it’s impossible to get a hysterectomy without there being some moderate to severe physical health issues to have the surgery performed. Heck, even my sister’s doctor refused to perform it after she’d already had two children that she could hardly afford to support.

I’ve always been completely infuriated that I haven’t had rights to my own reproductive system (my sister got pregnant the second time despite birth control AND condoms, so I have very bad trust with contraceptives) and I’m wondering if you actually found a doctor with sense or if there were other circumstances allowing you to have the surgery.

You can read my reply to Gale here.

Second message from Gale, September 2012: 

Hey, sorry about taking a while to get back over here – life’s been hectic! That sounds like a lot of process and worry. I’m rather amazed at all the steps you had to go through to get it done, but I’m glad for you that you managed to accomplish it. Thank you so much for the detailed explanation in response for my question. I’ll be keeping this page as reference for years to come in case I ever get a chance to get anything done with my own problems on the issue. And yes, I did read that post you made about the staff trying to talk you out of it as if you wouldn’t give the subject proper attention yourself. -_-” Sometimes the medical profession does embarrass itself…

Sadly, yes, I am in the US, in Mississippi (AKA, the deeeeep conservative south), and given that a just a couple of years ago we had to struggle to overturn a proposed amendment defining personhood as beginning at the moment on conception (which threatened not only the only abortion clinic in the state, but also common oral contraceptives as well as the lives of many women whose health or lives would be endangered by pregnancy), I seriously doubt I’d be able to find any doctors anywhere in my area to help with this.

I wouldn’t be able to pursue having a surgery or other treatments anyway because while my insurance is presently excellent, I’m a college student with no money worth speaking of. And Yeah, I’ve never reproduced, so that doesn’t make doctors any more likely to help me. It’s likely to be several years before I’m settled with a job and home to have cash enough to try any solutions to the problem, but I’ve been eyeing them in advance anyway.

Basically my reasons are this:

  1. My periods are literally debilitating. I would literally bleed out and die if it were not for the hormone adjustments thanks to birth control, and my cramps and other symptoms are utterly miserable no matter what BC I take. Since they took darvaset off the market, I haven’t found a doctor willing to give me a pain medication that can actually touch my cramps at all, and treating them with large quantities of Tylenol or smaller doses of alcohol so I can at least get out of bed just can’t be doing anything good for my liver. Besides, I hate feeling high on medication or drunk as a necessity anyway. >_>”
  2. There are numerous health problems in my family, including cancer, heart disease, and best of all, varying amounts of mental instability and disturbing amounts of depression. I’m healthy enough myself and have a good grip on what I have inherited or developed, but I would hate to inflict this bag of bad genetics on any child. For the last ten years I’ve been certain I’ll never want children, but even if by some act of providence I do change my mind, I plan to adopt rather than procreate, because blood ties mean nothing to me and orphans need love too.
  3. As previously stated, I just don’t want freakin’ kids! However, even though when I do have sex I used birth control, condoms, pulling out (it only reduces odds by like 30%, but hell, every bit helps), and not having sex when I’m at higher fertility on my monthly cycle, THAT DOESN’T MEAN I WON’T GET PREGNANT. I don’t want to face the risk, and I don’t want to face the decision of having an abortion or not! I think I should have the right to jump the gun on that constant state of worry/fear and the moral quandary itself.

However, I’m pretty sure I can’t legally “get fixed” in the States without having already given birth (something I never want to do anyway), or having a medical condition that proves that pregnancy or my own cycle is dangerous to my health or that of any fetus (which I don’t technically qualify for) I’d conceive. I really need to get this verified, but I haven’t had much luck understanding the laws I’ve been able to look up online, and I haven’t come across a doctor yet even comfortable with discussing the notion or explaining the laws in any detail after just vaguely stating that it’s a bad idea.

Anyway, I guess the long comment here wasn’t very necessary, but I’ve always been pissed about politics being jammed up MY damn uterus, and I felt like sharing my story a bit. Hopefully in several years when I’ve built a career I’ll be able to afford looking into possible solutions here, or perhaps out of the country if it’s necessary.

Reading what Gale and her sister are currently up against in the US, makes me very grateful for the UK’s National Health Service – provided you’ve learnt how to make the system work for you, and are up for the challenge, that is! (I had a hysterectomy for PMDD under the care of the NHS in 2012).

Gale, I wish you all the best, and I hope that you can find a way forward with your treatment soon. The NAPS forum has re-opened, it’s a great place to post questions.

‘Will I be able to orgasm after a hysterectomy for PMDD?’

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 with the thought of having this procedure but this one thing is really holding me up. Liz

Hi Liz. My own experience, and that of all the other women I’m in touch with who’ve also had a full hysterectomy for PMDD, is that you will still be orgasmic! It’s very important to include testosterone in your HRT mix post op.

I have read from many sources that:

The quality of your sex life with your partner BEFORE a hysterectomy is the best gauge of what it will be like AFTER the operation.

This is very much reflected in the comments I’ve read from the women whom I’m in touch with in an online support group, who’ve had the op for PMDD. So the ones who had a good sex life before the op, paint a rosy picture post-op, once their bodies have healed.

But for many women, living with PMDD has played absolute havoc with their sex lives/relationships, so post-op things won’t magically improve on their own, or they may have been unable to sustain a relationship whilst living with PMDD.

Sex after a hysterectomy with removal of the ovaries

  • Some women comment that orgasm feels a little different afterwards, and that it can take longer to become aroused.
  • But some women don’t notice a difference.
  • You possibly may need to use lubrication sometimes to make intercourse comfortable, whereas maybe you didn’t need it before.
  • Some women find intercourse more comfortable post-op because of the removal of the cervix/womb.
  • Others miss the feeling of the cervix during sex.
  • Your sex drive could be lower post-op, especially if your HRT isn’t balanced.
  • Or you might not notice a difference.
  • I’ve read from many sources that women who’ve also had endometriosis (and have found sex painful) find intercourse to be pain-free post-op.
  • Pelvic floor exercises are very important for all women, regardless. A strong pelvic floor muscle has a big positive impact on orgasms!
  • You’ll be free of menstrual cramps and heavy bleeding, which can interfere with sex.
  • Your vagina may be dry sometimes, you may need to use Vagifem (estrogen tablets applied internally)
  • Our bodies are different of course – it’s important to give your body the chance to heal and rest after a major operation, so everyone’s time frame in regard to orgasms (and their intensity) post-op will be different.
  • I haven’t come across any women who’ve had a hysterectomy for PMDD, complaining that they cannot now orgasm, that I’m aware of.

Pre-op, I had fantastic sex with all of my long-term partners (in the early stages at least..). Pre-op, I was prepared for the worst (as I also shared your fears regarding quality of orgasm, and there are some scaremongering anti-hysterectomy sites out there), but I felt the overall pay-off of being free of cyclical depression was worth the risk. But I was very pleasantly surprised about how unchanged my orgasms are post-op! As it’s not just the uterus that contracts during an orgasm, but other parts of the body too. [Note: I did find that Decapeptyl injections dulled my sex drive, as well as making me tired. Post-op, my energy levels are the same/better than they were pre-op.]

However, my sex life with my current partner had dwindled a great deal before the operation. After the operation, despite how good I’ve generally felt, it’s still virtually non-existent – BUT I think that this is to do with other unresolved issues between us (see my previous post), and is not a true reflection on my own sex drive post-op. I must admit that I have not prioritised my relationship over the last year, but I’ll be facing up to our difficulties in 2013. Post-op, with a clear, braver head, I now have the mental strength to reflect on what I want and need from a partner. I will post again on this topic further down the line, when hopefully I’ll have more to report!

I hope this helps. I’ve sent you a private message about joining the online group I’ve mentioned.

New Year reflections – 11 months after a hysterectomy for PMDD

Happy New Year! If you are reading this and are struggling with PMDD, I hope that you find the strength to try to improve your situation / make changes this year.

Some reflections, 11 months after having a hysterectomy for PMDD, aged 35 at the time. I’ve tried to be as frank as possible. I think 2013 will be an important year of (further) change for me!

Balancing HRT is a doddle compared to living with PMDD! It’s a relief knowing that I have the six-monthly HRT injections (estrogen + testosterone), but I’m free to top up a little with HRT gels too. I’ve now been referred to a top menopause specialist (NHS) very near to my home, so I no longer need to travel to London to have my HRT reviewed.

I feel pretty certain that the hysterectomy, with removal of the ovaries, was the right thing to do, for me, considering the options available, and my situation/goals. I felt SO sane and stable on the Decapeptyl injections [+ estrogen and testosterone HRT, I refused progresterone] that I knew I couldn’t go back to the way I was before that. [As having suppression without progesterone in the long term can put you at risk of cancer, I knew it wasn’t an option.]

I’ve been reflecting on my choices of partner, since my 20s; and seeing a pattern of me staying in relationships far longer than I should have due to PMDD. I.e. with partners who were not unkind, but who were inappropriate for me as we didn’t have enough common interests. In hindsight, the one thing I could have tried before having the hysterectomy was trying life as a single person again – on Decapeptyl (ovaries shut down). THEN tried life without Decapeptyl or a partner, to see what the PMDD was like (because irritation with my partner could make my mood worse). I would be interested to see what kind of relationship I might chose next time, with my new state of mind/newer interests/no baby agenda. However, the reality  for me pre-op was there was no way that I felt brave enough to elect to leave my partner/or even wanted to! I hope this makes sense.

I am thankful often that I don’t have the drudgery of motherhood to fill up my time. Sadly, I see few examples around me of fathers truly pulling their weight when it comes to their young children. In the UK, our society is not currently structured to encourage equality in parenting, I dread to think how long this will take to change. I was absolutely not prepared to be a single mother at any point, as this would mean a very hard life both emotionally and financially, possibly relying on the state. I feel angry for the women I know whose men have walked out of the family unit. Men often seem free to start afresh, often leaving the woman/children in dire financial straits, and with bleak career prospects for the woman. Plus the brutal truth is that I would not have wanted to parent a disabled child, and unless a woman is willing to take the risk of having a disabled child, or becoming a single mother at some point, I think she should remain childfree. I’m not on a crusade to put anyone else off parenthood, but I don’t think that the downsides of having children for a woman, are talked enough about. I’m aware that if my 20’s and early 30’s hadn’t been so chaotic, financially and emotionally difficult, due to PMDD, the outcome might have been different for me – but overall I feel enlightened and like I’ve narrowly had a lucky escape!

However, choosing life as a childfree woman means that I am in a very different place from most other women my age (I’m 36), which can be isolating due to my current location. So I need to seek out more new friends who have chosen a similar path, this probably means relocating. In my current location, I feel like I don’t have enough ambitious, hungry, creative people to socialise with.

I have occasional sad moods – BUT I can figure out the reason (sometimes it’s HRT-related), and think about what I need to change in my life, instead of feeling too mentally weak to make changes. Getting enough sleep is crucial to staying in a good mood, even more than it was pre-op, possibly. I don’t like having late nights these days, i.e. 2am, as I know I’ll pay for it with a dip in my mood. All alcohol seems to lower my mood, possibly even tiny amounts, i.e. half a glass of wine, so I’ve pretty much stopped drinking completely. The knock on effect of this is that I much prefer socialising in the daytime now, I don’t want to be in boozy environments.

Here’s a comment from another woman in her 30’s who also had a hysterectomy for PMDD in 2012, she sums up the way I feel too, particularly her last point:

On your other point, about whether the surgery will take all the craziness away…. I think most of us (maybe even all of us) on here would say that surgery has made a big and very positive difference to our lives. I can only speak for me, and in my case it certainly has. There are some big buts though. First, I only feel good if my hormones are right. Getting established on the right type and level of HRT has been and remains a learning curve for me. When it goes wrong I wobble, get anxiety, and feel low. But juggling HRT is many times preferable to living with PMDD, and the women on here (online support group) have been an amazing source of support. And at last I know I’m in control. Secondly, I am having to work on the fact that during my years with PMDD I developed some learned behaviours which are hard to shift. I have some relearning to do. The surgery has not been the answer to all my problems, but it has been the answer to the ones that stemmed from progesterone intolerance, if that makes sense?