Conservative or Radical Surgery?

[Jem33]

Hi,

I have stage 4 endo, bilateral endometriomas, adeno, ovaries stuck to back of uterus and that stuck to bowel.

I’ve tried the Mirena coil, decapeptyl 3 monthly injections with Tibilone and currently on Cerazette. I’m also on the waiting list for surgery at a BSGE centre.

My question is how did everyone weigh up what surgery to have? I initially choose conservative with the excision of endo/cysts and unsticking of my organs but now I’m thinking maybe I should just go ahead with a hysterectomy. I know that’s not a cure either but I’m scared I’ll end up with multiple surgeries just because ‘I don’t feel ready for a hysterectomy’. I’m 39 and my family is complete it’s just mentally I felt overwhelmed by the surgery options at my consultation.

It’s hard for me to know which of my symptoms are endo or adeno and I worry that if I have conservative surgery the adeno will just get worse.

Any thoughts welcome and appreciated.

[Fizzypoptastic]

Hi there, I’m 43, have endo & adeno. Stage 4 with pelvic, pouch of douglas, bilateral, uterosacral involvement. I had the Mirena fitted in Feb 2022 & endo excision in March 2023. My family is complete too. I was given the option of a hysterectomy but I personally thought that was a bit extreme as a first ‘treatment’ option. I hadn’t tried any hormonal contraception prior to this.

I’m happy with the Mirena & with the amount of pain suffered due to endo, it has been a Godsend.

Prior to diagnosis, my hormones were all over the place so I’m not ready to put my body through an early menopause.

I have developed Alopecia Areata recently though, no idea what has triggered that or how bad it will get. All the NHS offer for it is a steroid cream, which just makes the hair greasy so I’ve stopped using it.

All the best with your journey. xx

[Jem33 in reply to Fizzypoptastic]

Thanks for your reply.

The mirena was a terrible option for me it made my pain worse with additional symptoms, the GNRH analogues brought extra symptoms as well. I’ve not been too bad on cerazette to be fair but still constant pain and painkillers every day to get through. My period has not returned after the injections so maybe that’s why I’m not as bad.

My current option is surgery I’m just trying to make a decision as to how much I should have done and that has me in such a dilemma. I can’t seem to weigh up the consequences of each. Ie conservative my recurrence rate will be higher and I’ll more than likely need more surgery, a hysterectomy but keep my ovaries and possibly have to have them removed at a later date whilst risking regrowth by keeping them or having a hysterectomy and an oopherectomy and there be no going back?!

As I said my family is complete so I don’t need to keep anything for fertility reasons I’m just scared that I’ll age rapidly (yes I know that sounds so vain), I’ll bring on all these menopausal symptoms early and/or the surgery won’t even work and it will have been a waste of time.

[Damby]

hi Jem, had much the same as you and had a hysterectomy conserving just my ovaries when I was 33 (now 37). It was, without hesitation, the best decision I have ever made. Took about 9 months to feel fully healed but I would go through I all again in a heartbeat if I needed to. Due to having my ovaries I have occasional flares but it is NOTHING like what I struggled with before. I have pain free months, a decent sex life, and can wear clothes and swim suits without worrying about flooding. I’m no longer constantly debilitatingly anaemic and I feel like my immune system finally works. Hope this helps. X

[Jem33 in reply to Damby]

Thank you for your reply.

If you don’t mind me asking what were your symptoms before and then after the surgery you had?

[Damby in reply to Jem33]

Hi Jem,

Sure. I had debilitating pain for most of the month, bowel pain over my period, horrifically heavy periods with large clots and crazily heavily flow. I was very anaemic and needed iron infusions. I had endo on my bladder, bowel and sacroiliac nerves. I had many adhesions from endo and four caesareans, which were being made much worse by the endo. I still have flares but they are few and far between and I do a lot of work to keep stress/cortisol levels low and to eat well. My surgery was 7 hours with an endo specialist, colorectal surgeon and urologist. Hope this helps.

[Damby in reply to Damby]

Ah sorry - after surgery I just took time to rebuild strength. In the past four years I have had maybe four or five flares. Sometimes just two days of burning pain, once a flare for three weeks - this was helpful because I learned that stress is a major factor to setting off the inflammatory response in my body. Hope this makes sense.

It’s pain that can be managed with OTC pain medication, where before I was on every prescription pain drug available just to be able to be up.

[Jem33 in reply to Damby]

This is super helpful information thank you so much for sharing with me.

[Cocoacupid]

Hun I’m stage four with frozen pelvic organs all in my bowel I have asked for hysterectomy after this next surgery but I can’t have both as I have to have my bowel cut and then rejoined and because I had sepsis from my diagnostic surgery they can risk doing both at same time. I don’t have children and I’m 37 but I don’t have a boyfriend or husband I just want to have a pain free life if possible but if I do meet someone later on which I doubt I would adopt as there are so many children in this country who need a loving home. Xxx