Have you had a hysterectomy for endometriosis and adenomyosis?

[SinkGirl]

I know hysterectomy is not a cure for endometriosis by the way, before anyone says it!

I was diagnosed nearly 17 years ago. This bloody disease has ruined my life - wrecked my career, damaged relationships etc. I’ve had six surgeries and every treatment going. I’ve been on opiates daily for about 15 years.

My last surgery was in 2015 then I had twins via EMCS in 2016. Since then I’ve barely been on any hormones as they all cause me so many problems. My endo pain has worsened since, especially over the last year.

My last cycle was inexplicably 40 days and the pain throughout was horrific. Now less than two weeks after my period finished I’ve started my next one and it’s agony.

I last saw a gynae (local endo centre about two years ago) - because even excision surgery has never been that successful in the past he recommended a hysterectomy but I said I wasn’t quite ready for that. Now I’ve been referred back and I need to decide whether to have the hysterectomy or push for another excision surgery and hope it’s more effective this time.

I’m 38 and want to keep my ovaries since I still have ongoing hormonal issues following a course of zoladex years ago. So that means the endo will likely come back but at least the adeno and the hideous periods will be gone.

But then I hear horror stories about people whose pain is worse after a hysterectomy and nobody will listen because they’ve had a hysterectomy. Also read a study recently which suggested that even having just your uterus removed can have an impact on hormones and brain function, two things I struggle with enough already!

I would love to have another baby but I know it would be the wrong decision for us as a family so I’ve let that go.

I just don’t know what to do for the best. Go for it now or push for one last excision surgery to hopefully tide me over until I’m closer to menopause anyway. Our twins are 4.5 now but both disabled so still need a lot of care, still in nappies etc. Would be a lot easier to recover from surgery if they need less lifting etc but who knows if that will happen in the future.

Would love to know what others think if they’ve gone for it or decided against it. I really don’t know what to do for the best.

I did it - hysterectomy and oophrectomy in my early 40s (no children). I've never regretted it for a moment, as it felt like getting my life back.

I've not experienced a return of the pain and the freedom from it has been life-changing.

Really glad to hear it worked out so well for you Larach - did you start HRT? I’ve had some really awful long lasting knock on effects from zoladex and still not back to normal (still have thinning hair, weight gain, loss of sex drive and fairly low oestrogen levels) so I’m really worried about screwing up my hormones further, but also worried about the bloody endo coming back. Really difficult to decide what to do for the best.

Yes, I didn't love zoladex either.

I use oestrogen, which I've had no side effects with at all (despite some pretty miserable previous experiences with the pill).

I'm sure others will be along with different experiences. It's definitely a decision which deserves all the time you need to think it through (and talk it through) because as you've already said, everyone's experience is different.

Yes I think it’s progesterone that screws me up, and if I’ve had a hysterectomy I can have oestrogen only HRT so that would definitely be a positive.

The lack of a crystal ball is definitely a problem with all these endo related decisions but obviously this is a big irreversible one

I am three months post hysterectomy for extremely heavy periods and pain, caused by fibroids but they found endometriosis whilst in there. I am loving not having the periods, which were running my life. I can very much recommend for that. I would say my hormones have not settled down and I am a bit wobbly emotionally. I did keep ovaries so hopefully this will settle.

I was on zoladex which I found horrendous and took myself off. I was on zoladex and hrt. I had increasing anxiety that led to what I can only describe as a small breakdown. I was then put on beta blockers. Then half my hair fell out.
I noticed you mentioned this. I thought the hair loss was from beta blockers, you had it from zoladex? I'm really curious what other effects you suffered?

I did and I have regretted it ever since.
I had everything removed and they severed my ureter so have been left with a nephrostomy.

I know I was extremely unlucky but I have been in and out of hospital since with complications, infections and sepsis twice.

That's awful bellag79 so sorry that's happened to you

Many years ago I started a facebook group called adenomyosis miracles. I don't run it anymore as I came off facebook. I know it is still being run and is amazing for support and lots of answers.

I would go on there. I am so proud the group is still very active and the ladies on there are amazing. Nothing but pride for that page.

I did. I had a laparoscopic total hysterectomy for endometriosis, adenomyosis and fibroids and it has been life changing! I can leave the house without a rucksack of supplies and a plan of every available toilet nearby, do sports that I couldn’t have dreamed of before, wear summer dresses (!) and I am totally pain free. It’s a very personal decision but I left it so late that I really didn’t have any other options and the only regret I have is that I didn’t push for it sooner.

I use oestrogen HRT in a gel and I’m so much better then pre-operatively. I’m no longer a raging hormonal mess and I feel like the me of 20 years ago.

It took so long to get my formal diagnosis for endo and adeno that the uterus was too bulky for a safe hysterectomy and I was warned of the risk of damage to my ureters. I used opiates to tide me over until menopause just to have some quality of life. Menopause has been like getting my life back after decades of pain. If I had been diagnosed and offered a hysterectomy sooner, when it would have been lower risk, I would have taken it. It's would be worth discussing with a specialist so you are informed about future options and keep in mind that the disease can progress and what's available to you now might not be feasible in the years to come.
I'm sorry for you and for all of us that endo and adeno care is poor and treatment options are limited or not reliably effective. I hope whatever you decide improves your quality of life.