bowel and ovary adhered, new endometrioma - how long should I wait for surgery and full hysterectomy?

[Liverpool53]

Hi there. I’m 44 and was diagnosed with endo at 36 - 7 years after pain began. I’ve since had 3 laparoscopies, inc removal of one ovary. I now have stage 4 endo and my bowel, ovary and uterus are adhered. A small endometrioma is growing in my remaining ovary. I’ve been told my bowel does not appear to have deep infiltrating disease at present. I’ve been offered full pelvic clear out - hysterectomy, tubes and remaining ovary but am undecided. A big operation and then thrust into wary menopause so I’m weighing up my options.

I’d hugely welcome advice of those that have been there.

My pain is much improved as I’ve been on a gluten free diet for several months. I’m wondering if this could slow endo growth sufficiently that I could stave off hysterectomy until closer to natural menopause? My main concern is bowel endo getting worse in the meantime… any thoughts so appreciated xx

[Sunset-lady]

Hi if the pain is much less and you feel better on gluten free diet then continue with that as you've probably put your endo into remission. We don't talk about this enough but it's very common. You need to monitor your symptoms carefully and keep a look out for peri menopause as this will make your estrogen erratic. I highly recommend reading Lara Briden's book Hormone Repair manual which will inform you about what to do as you age. My endometriosis was non progressive but I took HRT at 47 and the estrogen led to fibroids and then my endometriosis started again. If I'd known more then I would have started on natural progesterone only as it's progesterone that declines not estrogen. I'm 52 now and just had a full hysterectomy- no endometriosis inside the bowel but it was a complex hysterectomy and was carried out at a BSGE centre. If you want to know more about controlling endo then read Healing Endo by Katie Edmonds and visit her website. It's a big operation but if you're fit and healthy you'll be fine. I would also recommend robotic surgery as the recovery is so much better. I feel the best I've felt in years. Xxx

[Elaine91]

Hi

There’s a number of different medical treatments you could have which might slow the growth or ease the pain, from birth control pills/mirena coil/prostap…have you discussed these with a gynae/GP and what have you tried already?

I had the full op at 46 (pre-menopausal) and was left with chronic insomnia , which is hell. Ladies who have the op when they're older have an easier time

[JOSANDY40]

Hi,

With diet, removing gluten was a good thing. You should also consider removing other foods that contain Estrogens or Histamines. eg. Soya, Avocado. Some pips in tomatoes and other fruits. Anything that causes inflammation like oats. I"m lactose free too.

I am stage 4 Endo. Been stage 4, most of my life.

The problem with Endo at stage 4 it has set up separate groups of Endo. Great if your Endo is still confined. A clearance might not cure Endo. At 44yrs you still have a lot of yrs before normal menopause so you would require add back, this also would help any left continue. Having a Hysterectomy can bring other issues with physical work, nerve damage, ageing and new pain and issues with hormones given. If it's a total Hysto you with probably lose 1 of the 2 types of orgasm.

Personally if it was me I would try to wait bridge the gap of the next 10yrs then see.

Yes it isn't easy with Endo.

I suggest you read up on Hysto the positives and the negatives. I also hope you see a Endo specialist, not a simple gynaecologist. The new information on Endo says 'you should only have a Hysto as a last option and evidence shows Endo doesn't generally stop'.

My best wishes

[Earthmother1]

Hi! I'm 49 and 6 years ago had a laparoscopy which included getting rid of some of the endo (the consultant said she couldn't get it all!) She removed a fallopian tube as it was badly scarred and damaged and she removed an endometrioma. I then went on desogestrel for 6 years, my periods stopped, but over time I started to get worsening endometriosis symptoms. I saw a gynaecologist in Feb and was promptly started on decapeptyl, which is a chemical menopause. I struggled for the first month with menopausal symptoms, I was then started on hrt as an add back. Ive now just had my 3rd injection and ive been experimenting with the hrt, I take utrogestan vaginally every other night and I'm on a patch and a half of evorel 25, I also take ovestin vaginal cream twice a week, and hopefully the menopause symptoms are getting better. I'm hoping that I can be on this protocol until I go through menopause as I don't fancy going through a hysterectomy, it's such a big operation and doesn't always resolve endometriosis symptoms. I've also been referred to a specialist endo centre, and health wise I've stopped drinking alcohol eating healthier, and drink plenty of water, I'm also working at keeping my stress levels low and I walk every day. I'm still feeling fatigued and suffer low motivation, but I feel a lot better than I did at the start of this year. My mental health feels like it's improving too! So I'm hoping that chemical menopause will work for me 🤞 maybe you could try this approach first? I wish you well whichever path you take, I hope you find a treatment that works for you xxx