Adenomyosis, should I have hysterectomy?

[mavenmi]

The short version is that I have adenomyosis. I've always had heavy periods with period pains that make my thighs numb and require prescription painkillers. At the age of 44 I had some symptoms of perimenopause and tried HRT. After two years I came off and that seems to have triggered a strong reaction. I had a spate of really heavy bleeding and passing big clots and fleshy lumps. I had a biopsy (clear), a transvaginal ultrasound which showed 23mm deep endometrium with striations even after progesterone treatment to reduce it and a 15mm polyp, then a hysteroscopy (confirmed polyp and adenomyosis) and polypectomy (successful). That was followed by endometrial ablation which was unsuccessful, and I returned to very heavy bleeding. I have had bad experiences with Mirena/Jaydess, and so I'm now on Zoladex plus Tibolone/Livia, that have almost entirely stopped the problems with bleeding. However, I'm having lots of side effects and appear to be wavering in and out of menopause over the 11 week cycle between implants. I'm booked for a hysterectomy on Tuesday, but unsurprisingly I'm a bit anxious about it and having some doubts.

I'm trying to weigh up the hysterectomy compared to staying on the zoladex, which feels impossible because there are so many unknowns. I've got teenage kids and no desire to have more, so loss of fertility isn't an issue for me.

After a year on zoladex since the ablation, the biggest ongoing issue for me is fatigue and sleep pattern. It is something which I know a lot of people report with the zoladex - so I am hoping would improve if I had the hysterectomy. Since I've been on it I have quite disrupted sleep. I wake often in the night, and often find it hard to get off to sleep (it tends to be a time I get a patch of anxiety which doesn't help). Perhaps related to this I get suddenly exhausted in the day, and end up crashing out on the sofa most days (sometimes twice), even if I've had a lie in. My husband and work colleagues have noticed the change and can see I don't have the drive, motivation or energy I had before. It is better than when I first started zoladex, when I felt like a character on a video game whose energy bar would suddenly go from full to empty and I'd have to just sit down where I was and rest after the slightest bit of exertion, but it still disrupts my life a lot. I've worked really hard on diet and exercise to see if I can improve things, and I have lost two stone from my peak weight and improved my fitness, but the fatigue and sleep issues still persist.

I've also had a lot of brain fog, and can't remember words and ideas like I normally would. I also get more headaches and migraines (though again better than they were at first). I also have very dry skin with itchy rashes and cystic acne that is uncomfortable and visible on my face every day. I get intermittent vaginal discomfort, some abdominal/lower back aches and emotional symptoms (including short-lived but quite marked patches of anxiety, but also tearfulness and lower mood) that worsen if I don't have the next injection by 11 weeks. I'm also getting a bit of facial hair, whilst my actual head hair is thinning. Finally, I need to be very careful about osteoporosis, as my brother has been diagnosed with this.

When I started on zoladex I had a lot of hot flushes and joint pains but these were eased with HRT and I now only get them in the fortnight after each new implant or if I forget a pill. I suspect the menopause symptoms would be better if I could have a stronger HRT, but the doctors say they can't really use anything else without bringing back the bleeding.

But it is all tolerable, and will hopefully reduce when I complete my natural menopause, which is likely to be within the next 3-5 years.

By comparison the hysterectomy has the risks of general anaesthesia, and the pain and need for time off during the recovery period. There are risks of complications both during the operation and of things like prolapse later down the line that worry me. I've also heard about impact on orgasm and people losing their sex drive. However, it might take away all the side effects of the zoladex, including the issues with sleep/fatigue, and allow the consultant to prescribe different HRT that might resolve some of the other issues.

So I'm hoping to hear from people who have used zoladex and/or had a hysterectomy or otherwise have relevant experience to offer whether I'm making the right choice to have the operation next week.

P.S. I posted in the perimenopause forum here: healthunlocked.com/menopaus... if you want to read more background.

[Mindfullness4791]

I'm sorry to hear what you're going through. I am awaiting a hysterectomy for Adenomyosis and cannot wait to have it. I have a 12 to 18 month wait 🥺 I'm 49.I would say at 44, you could have years before you go into natural menopause and Zoladex is only licencesed for 6 months.

From what I've read, everyone that has had a hysterectomy with Adenomyosis have all said how life changing it is. It will cure the condition 🙏

I was on Prostap (similar to Zoladex) and it is brutal. I probably need to go back on, but they need to review my mri results first.

Wishing you lots of luck 💕

[mavenmi in reply to Mindfullness4791]

Thanks. Just to clarify, my perimenopause related problems started at 44, I'm 49 now. And consultant says that there is established off-license use of zoladex for long term treatment, both in bleeding disorders and cancer treatment, so he doesn't mind prescribing it until I'm out the other side. But I do hope hysterectomy will be a decisive end to the adenomyosis without the side effects of chemical menopause.

[mavenmi in reply to Mindfullness4791]

Also sorry to hear you've got a long wait. I was very lucky in that my job gave me private medical cover, so there wasn't really a long wait, and beyond 12 weeks I could pick a date that was convenient (hence choosing next week so I could use the Christmas/New Year break as part of my time off for recovery). I did put it off for a year to give the zoladex a chance to settle and to lose some weight, but I figured if I'm going to do it I need to get it over and done with!

[Naribeth1975 in reply to Mindfullness4791]

Hi, what symptoms you have of having adenomyosis?Im also suffering of this

[My_Username]

Sorry you're having a hard time.

I was on Prostap (like Zoladex) for a year prior to surgery. In my case I had the ovaries removed too. In terms of the pain and bleeding, my surgery was a success and improved my quality of life.

What I wanted to add is that all the side effects of the Zoladex you listed are essentially a mild version of what happens when the ovaries fail or are removed.

If you retain your ovaries, then they should start working again and the side effects of the Zoladex will go. But, with hysterectomy, there is a risk that the ovaries will prematurely fail, in which case you'll probably need HRT to deal with the after effects.

[mavenmi]

Thanks. The plan is to keep my ovaries unless there is something unexpected (like they find endo or PCOS during the surgery). I don't mind being on HRT (I was on it for two years prior to the problems, and have a mild version now to try to manage the side effects), so if the hysterectomy makes that possible without restarting the bleeding, that would be a definite gain in my quality of life.

[BloomingMarvellous]

It’s a tough one isn’t it. Between the devil and the deep blue sea choices wise. It’s a debate I’ve wrangled with and concluded it’s risky either way and there’s no way to be able to gaze into a crystal ball. Life carries risk. When I was your age I was up for a hysterectomy ( endo and adenomyosis hadn’t at that point been diagnosed) the perimenopause bleeding and pain was outrageous and sheer hell. It didn’t happen because I didn’t have the necessary support to enable me to cope post surgery. Knowing what I know now and facing that decision with an older body ( that would be unlikelyq to recover as well physically ) I realise that earlier would have been so much better . I’m offered it now, had managed well with doing other things, but I don’t do well with the progesterones/progestins required to control post menopause endo and adenomyosis ( yup, it’s a thing) and feel it’s probably my best option. I still get the swelling of the uterus that puts pressure at times on my gut and bladder function which is no joy. The progesterones make me truly depressed periodically. The exhaustion and pain doesn’t necessarily end with menopause.

Zoladex has all manner of side effects which really unless you have to invite them through the door are pretty unpalatable. We are talking long term impact. Dr Louise Newson on her balance app has a lot of information regarding the importance of our hormones for general health ( heart, immune as well as osteoporosis, muscle strength etc ). It’s worth genning up on it so you know what you are fiddling with .

The long and short of it is some women do really well with hysterectomy and it truly is a relief and as you rightly say prolapse risk is an issue. You might want to explore how New Zealand practitioners handle adenomyosis and see if you can find a functional dr here if you’ve the means too.

There is no clear, easy answer but being informed and being your choice in tough circumstances is a big plus. Looking into the fear is a big part of the answer and taking the risk that you can get behind is the best way forward. Once you have the information you have to take the plunge. Good luck !

[mavenmi]

Thanks. I'm sorry you are still having problems, and that you were limited in your options because you didn't have enough support to feel you'd cope after surgery. That sucks. I had no idea symptoms of endo and adenomyosis could continue post menopause. I guess it is another little nudge towards having the op. I also had a really grouchy day today, and I hate it when my hormones affect my interactions with the people I live and work with.

[BloomingMarvellous in reply to mavenmi]

First don’t ever apologise to yourself or give yourself a hard time because of how dire the illness makes you feel. Yes, it’s uncomfortable for those around you and” being grouchy” is a bit tough for everyone but they will be there as long as communication keeps going. I got to a point when I was so tired and angry with it all I felt I couldn’t even escape from myself. It’s a horrible place to be . The self loathing as a consequence of the illness and hormones can get way out of hand, so finding mundane ways of being kind and loving of yourself is really essential. Weirdly, it might even help you find a way to decide. Bet your bottom dollar if you were talking to a friend, listening to what you’ve bravely shared here what would you want to say and do for her ? Small to large ways to care am sure you’d have a lot to offer her.

Sometimes, someone, saying there are “no prizes for martyrs in this world” and pain isn’t the option for life. Too often women normalise pain, extreme pain and distress. We expect ourselves to continue bearing it beyond the point of reason and others around us grow used to us accepting it. Wanting it to stop in this current situation is utterly normal but there is a price to pay for that - unfortunately there is no get out of jail free card. However, there are enough of us ahead of you to say it can and does get better and try to light the way. Whatever you do don’t accept the level of pain. It’s not okay.

Many post menopausal women improve but there are enough of us who don’t that it needs more open discussion. Given there is poor understanding of the wide scope of endometriosis and adenomyosis disease on us pre menopause it’s hardly surprising that little is understood about how it functions during and post menopause. There is a lot of misinformation flying around even with medics who ought to be better informed that further muddy the waters.

Whatever you decide to do research and ask questions and double check. Find the best you can - you deserve to be feeling a lot better and have more of your life back. Thank you for your empathy re my earlier situation luckily I am far better cared for and in an improved situation to go ahead now . I hoped that my retrospective view might help you in the place you’re in now. Just make sure you get the best care possible.