remove ovaries or not? Confused & worried!

[Tori15]

hi,

I’m early perimenopausal at 48. I just been diagnosed with endo on my ovary and adenomyosis. I’ll try and keep this short, but after years of being on the pill with no symptoms, 10 years ago I was diagnosed with hormone oestrogen receptive breast cancer, so no contraceptive pill and 5 years of tamoxifen, which gives you medically induced menopause. At the end of the 5 years, no advice from go or anyone else I stopped the tamoxifen cold turkey, in the USA I found out they recommend a slower withdrawal, anyhow (sorry I am getting there!) every month afterwards I had the most excruciating pain in my abdomen and bottom, diarrhoea, nausea and cold sweats every month. Which eventually led to my endo diagnosis. My symptoms vary month on month some can be just mild stomachs pain to the full on ‘gastro joy!’

So what I need help with is they are suggesting I have my ovary out and possibly remove my uterus, I am very concerned about this as I am learning that endo can adhere to other areas of your body and mine seems very close to my bowel (maybe they all do if on the ovaries). I am worried that such invasive surgery will lead to other issues, what if they nick my bowel then I have bowel problems as well as the fact that endo can come back! But if I do nothing will it get worse and more serious?

Have others had similar ops and concerns of damage to other organs?

Reading other posts on here makes me even more nervous, it seems women get the short stick in terms of medical treatment and dismissive surgeons/doctors and whipping out our ‘bits’ is the go to answer,

oh and I can’t and wont be able to have any hormones or hrt due to my hormone receptive cancer history.

Thanks and sorry to sound so naive or whingey 🥴

[Avourneen]

You don't sound whingey or naive at all,

Frankly having endo for years is enough to give anyone cause to complain and it is completely normal and actually very sensible to be cautious about surgery. I was so scared before my first op that I was crying when I went to the anaesthetist. You have been through so much physically and mentally having had cancer too, you have had a very very tough time and you have every right to vent the stress and frustrations you have.

I thinking nicking the bowel is quite rare but it is a big operation. Having your ovaries removed is the best way to avoid the endo reoccuring. A hysterectomy without taking out the ovaries has a reoccurance rate of endo of about 60 percent, taking out the ovaries drops the chances of the endo coming back to about 20 percent, as long as you don't take oestrogen HRT.

I had the chance to get a full hysterectomy 3 years ago didn't do so and now my endo is so much worse right up into my diaphargm and throughout the bowel too. I wish I had had it but then other ladies will tell you they had a lot of problems after hysterectomies and wished they hadn't had their op. But the scientific evidence does firmly show there is far less cahnce of the endo coming back if you have the ovaries out.

As you are 48 it might not be that long until the menopause so the sudden fall off. in hormones won't be as big a shock as it would if you were very young. I'm 50 and still waiting for my menopause and I can't now have a hysterecomy as the endo has grown so badly they can't take the womb out without taking everything it is stuck to out. Everything is particularly stuck to the bowel.

So it's swings and roundabouts have surgery and it might stop the endo form coming back and spreading, but it doesn't always work sometimes women have the surgery and it is all back in a couple of years, don't have it and it might spread rampantly but it might not. I'm sorry I cant give you very firm advice either way. I would talk it over with your surgeon and try to get a second opinion and hear what another specialist has to say. Some of the very well known US surgeons give a free consultation and will look at your scans. but don't feel abd about being annoyed with all this or sharing your frustrations it is a hard slog and we all have to share our feelings with people who listen. Good luck.

[Lindle]

A major factor in progression/recurrence is the stage of the endo when going into menopause. Severe (deep) endo doesn't need ovaries to progress so there is no guarantee that will stop it. So I would say the first step is to establish whether you have severe endo. I am assuming that the scan you had was a basic one in gynaecology and those sonographers typically only have the skills to check the reproductive organs. Ovarian endo in the form of endometriomas (chocolate cysts) show well so if that is what they found these are often associated with deep rectovaginal endo which they won't have been able to look for. If you have the funds it would be worth having a private advanced ultrasound so that you know what you are dealing with and can then make a more informed decision. It would be around £300 to £400. If you search for a group called Endorevisited there is a list of radiologists/ultrasound specialists.

As you enter menopause it is going to be important to establish if you have any deep infiltrating endo that might risk organ function, such as the bowel, so it isn't about whether to remove just the ovaries and/or uterus but about the whole picture. The presence of endometriomas in menopause has been linked to ovarian malignancy so consideration of removing the ovaries for that reason is a discussion to have; likewise adenomyosis has links with endometrial cancer so removal of the uterus might be a consideration from that perspective also. But in those with severe endo elsewhere, which typically will be rectovaginal involving the uterus and bowel being stuck together, with ovarian involvement (adhesions and endometriomas, usually but not always the left), a hysterectomy and/or oophorectomy isn't a simple procedure. It would need the skills of an advanced team at an endo centre along with excision of any deep endo as considered appropriate after careful discussion and joint decisions between you and a multidisciplinary team.

So in short I would suggest that an advanced scan would be your first step to know just what you are dealing with. That would put you in some control and give you a better basis for coming to a decision.

[Tori15 in reply to Lindle]

thank you both for your kind and helpful responses. Not that you wish any of this on another women but it’s good to know there are others to share the stresses and uncertainty that comes with these conditions.

I had an mri but was told they cannot see how deep or what it may have adhered to, so another scan may be the way forward. I think I certainly need to ask more questions.

Thanks again and wishing you both well.

@avourneen, I am sorry to that you are in such pain and that the endo has spread so.