Recurrent endometriosis/endometrioma

[Ivy00]

Hi everyone,

I was hoping to get some advice. I am 35 years old, do not want children and have just been told I have endometriomas on both ovaries (one is 6cm+, the other is smaller). This is in the context of significant pelvic/bladder endometriosis and two prior surgeries. Both surgeries I had to have endometriomas removed. I have constant pain, I pee a lot at night which interferes with my sleep, I am really tired.

I don't care about reproductive functions, but I am seriously paranoid about my bladder function.

I tried various hormone therapies prior to my diagnosis (~15 years ago) which really affected my mood and overall quality of life. I have since avoided any treatment with the word 'hormone' in it like the plague.

My consultant had previously mentioned hysterectomy as a potential consideration (this was before the diagnosis of the new cysts).

Any advice from women who have had a hysterectomy (whether total or partial)?

Any premenopausal women who decided to remove their ovaries? What influenced your decision? and what sort of post treatment was involved or what options were you given?

This disease is horrible.

Ivy00

[Moon_maiden]

It’s a tough one, I had a hysterectomy November, but still getting the same abdominal symptoms, pelvic are is better. But I don’t know if he actually took out all the endo as his notes weren’t up to any where close to scratch. So I’m currently in a complaint. He didn’t tell me he was operating without an MDT meeting. It’s so important to remove all visible endo with a hysterectomy. I am older so I don’t know how your bones would be. It’s not an easy decision but talk it over with gynae as to exactly what would happen, endo etc.

[Ivy00 in reply to Moon_maiden]

Thanks Moon_maiden, I am sorry that you are dealing with that uncertainty. I hope you get some answers soon!

[Aurorasparkle]

Hi Ivy Hysterectomy doesn’t cure endometriosis unfortunately. You need to have excision surgery under a recognised centre of excellence under BSGE.

Xx

[Ivy00 in reply to Aurorasparkle]

Thanks Aurorasparkle, I have had two excisional surgeries with an advanced laporoscopic surgeon who specialises in endo. This is a recurrence unfortunately. The chocolate cysts are the tip of the iceburg, I can feel its back in other places. Its a crap disease isn't it...

[ciaotuffy]

I'm in a somewhat similar situation except I'm turning 50 this year. I've had 1 lap to remove endometrioma (saved part of that ovary) and severe endo on the other side (saved that entire ovary), removed tubes and had uterine ablation. I'm 6mths post surgery and an endometrioma grew back, 5cm. Caused so much pain had to make a trip to emergency. I can't believe it grew back so quickly! I couldn't take hormones because of prior breast cancer so the other option was gnrh meds to possibly slow the grow. The surgeon now recommends I have surgery to at least remove the cyst. He suggested either conservative surgery where he would remove cyst and part of that ovary, leaving me with a sliver of ovary and leaving my uterus. Or I can have total hysterectomy and remove ovaries also. I'm thinking that since it grew back so quickly this time, the chances of something growing again are high so might be best to take it all out now and avoid a 3rd surgery. How quickly did your endometriomas grow back after your past surgeries? Given that you might need a 3rd surgery, would you recommend removing everything? Please let me know how you're doing.

[Ivy00]

Hi ciaotuffy,

Sorry to hear about your issues. This really sucks. I am finding there is not enough, but also too much information out there regarding hysterectomy for women with ovarian endo. I spoke to the nurse that runs the endo clinic where I am from yesterday. She told me that in her experience women with ovarian endo, who have had a hysterectomy, usually present several years later to have one (or both) ovaries removed. Unfortunately, from what I have been reading it sounds like it might come back on your ovaries, and it sounds like removing them achieves the best relief. For me, it has come back on both ovaries, every time. I am still deciding on whether to go the hysterectomy route at all, as removing my ovaries is not really an option - I want to get to at least 45 before I go through menopause. Hopefully my dysfunctional ovaries will get me there. If I do decide on hysterectomy, I also have to consider whether to leave the cervix or not (two different specialists have given different opinions), as removing the cervix is more complicated due to ureters (which I have had issues with) etc being nearby. Also the risk of prolapse afterwards. Its all really doing my head in, but then I definitely feel that less uterus in my pelvis is more. I am scared that my endo will get so severe, that it wont be an option for me in the future, so bite the bullet now so to speak.

Its a hard decision to make.

[ciaotuffy in reply to Ivy00]

Thanks for your reply and info. Interesting to know that people w ovarian endo who have hysterectomy usually come in later to have ovaries removed too. Yes definitely 35 is young to remove ovaries. Given I'm turning 50, removing ovaries now is probably the way I should go to avoid yet another surgery. I'm just really scared and wondering if it will be the right decision or what might go wrong or what side/health effects will come. I'll also have to look into the cervix. I just assumed that it is always removed with the uterus. I hope that things will work out for you.