Living with Endo.

I was in extreme pain every month crippled on the floor, unable to move. My condition was missed for years by the doctors who refused to believe there was anything wrong with me, in extreme pain for three weeks out of four I eventually got an ultrasound scan which picked up a large mass.

I saw a gynaecologist and confirmed that I had endometriosis, I had it so severe that he had to bring in a bowel surgeon to remove 10 cm of Bowel and do a resection, the surgery took 7 hours as everything had fused together due to all the years my condition had been missed. I was in intensive care for three days. I have had eight more surgeries since then, I have also had confirmation that I have stage 4 endometriosis between my vagina and anus, I think they call this the Douglass Pouch. If I had surgery to remove this, then I could end up with a colostomy bag and a full hysterectomy.

I tried IVF 5 times but no eggs, i then tried IVF with donor eggs all top grade but no pregnancy at all. I am infertile, I have no children and all the IVF treatment has put me in early menopause, in one way this was devastating to me but on the other hand my periods stopped so I did not need to have surgery to remove the endometriosis from my Douglass Pouch.

I am now going through all the menopause symptoms naturally as I am unable to take HRT due to the endometriosis. I am so depressed sometimes that when I go to bed, I fall asleep thinking of how I can end my life, It’s bad enough everything that I have gone through but I am struggling with my hormones all over again, I am mostly depressed and I cry a lot, I feel anxious and scarred. I feel all alone with no one to talk to.

[nikkimatt2019]

Hi I'm so so sorry you have been going through this and everything else. Your not alone we all are in the same situation I have bipolar so I know 100% how u feel as I'm the same. I had waited so long and that's my worry as well I have to wait 4 months before they can do op but I think it's got worst and prob has spread I'm scared as I dont want to have a bag connected to my stomach I feel crap about myself as it is. But honesty if u need anyone to talk to message me or anyone of these other women in here. Honesty some that's spoken to me have been lovley women we listen and understand i can explain more about me. Quite alot u put about waiting and left i can explain more about me as they hace done that with me but even worst to me as well. Message us all we are here u are not alone.

[Jade2006]

Hello

You are not alone , I’m sorry you feeling this way .

I feel like I cry a lot more these days because of everything I have had to go through .

Last year was the worse year I have ever experienced I’m now trying to move on with my life and be more positive which is very hard.

Can you have a chat with your doctor maybe I know some are useless though but sometimes you find a good one.

Sending positive vibes, feel free to message me anytime lovely xx

[BloomingMarvellous]

Go and talk to your GP it’s not okay to constantly feel this way. Some Dr’s safely use HRT with endo patients - Have a look at the Newson Clinic’s Balance App for resources. Try Biocares Omega 3 for the depression rich with EPA & DHA for the inflammation that is part of both endometriosis, menopause and depression.

[SK2021]

Hello lovely! I’m so sorry you’re going through this I am in the same boat I’m only 31 and going through medical menopause severe endo feel so down all the time ☹️. Sending across lots of love stay strong you are not alone ❤️

[SarahLouise12]

Hi, you are not alone, I am sorry to hear your experience. I had full hysterectomy on the nhs and it didn’t work, I was in more pain in th end. They discharged me and told me it was IBS, put me on to tibilone as It meant I went into surgical menopause. When I told them I am in pain they blamed me for taking the hrt they prescribed. It’s like I had to choose, going mental with menopause or pain!! I am now with Newson and I can take hrt, with endo you have to have progesterone to stop the oestrogen flaring up the endo. I take body identical HRT, I pay private via Newson. It has helped me massively, I also take an low dose of ant depression meds 10 mgs of citalopram, that helps to deal with the awful low feeling I get with endo. I just paid private and got a bank loan in the end for excision Surgey. Like you I felt my life was not worth living and I got it done in December, so far so good! I don’t know if that helps you, but good luck and just keep trying hun ❤️‍🩹

[Endo_Jaded]

Hidden and all others… is there an increased risk of resection with Pouch of Douglas obliteration?

I’ve Stage 4 although my surgeon said I couldn’t get much worse.. I’ve been left knowing my situation for 4 years due to incompetence. I’ve been told this year that it’s possible I’ll need a temp resection and this could be probable as a permanent thing!! But I haven’t really been fully informed to be honest about anything.

I am due a hysterectomy and was supposed to be in surgery 28 Feb but my surgeon forgot he had me on tibolone and it has to be stopped 6 weeks prior! So back to the start as an urgent case again for the 100th time!

Anyway, as OP was discussing this has your surgeons said that it’s highly likely a resection will occur if POD is Obliterated?

I’m so scared, I’m 35 and had to have my children early *really early due to fertility issues and genetics.. but no one bothered to hear the cry’s for help in endo town until 2017 and I’d suffered since I was 8 with bad pains and cycles and this just got worse! I don’t want a stoma but I accept it could make a significant difference but it could also destroy my confidence and relationships… anyone been confirmed or just warned?

Also… has anyone noticed how many women in our age groups end up losing fertility/uterus or bowel due to this and still not enough funding or research for all women!

[Jenn2022]

Just to say, I had stage 4 endo including pouch of Douglas and endo attached to the bowel. I had a total hysterectomy and the endo excised. I had a bowel shave but no bowel resection or stoma bag. So yes it's possible you might need these things, but it's not a certainty.

[Rarejewel47]

Hi, I hope this note finds you well. I have missed work 3 days now because of pain associated with endometriosis. This is third day, aand I just woke up (its morning in my country, Port Moresby) and I kind of feel better. I had drastically changed my diet to vegan, except I was still having red meat and always frying my food. Now I have cut that out, just having fish. Also have put myself on herbal tea which I make myself. Grated ginger and turmeric, one teaspoon of black pepper and oregano leaves (dried or fresh whichever is available). I just started this and I'm told, have to take it every morning for a month. I'm drinking this whlist writing to you. These are actions I'm taking to help myself. Hope it helps. I pray you get better soon. Much love.