Endometriosis

[AC20218]

From starting my period I've had really painful periods and heavy periods, I've had pelvic pain during my cycle and uncomfortableness during intercourse.

I've dealt with this for 10 years now, last year I suffered an ectopic pregnancy, in which they said that I had adhesions on my bowel but they didn't see any endometriosis (these were just surgeons who were removing my tube, this surgery wasn't to look for endo) I'm wondering if I went to someone who specialises in endometriosis privately that they'd be able to do another key hols surgery to look specifically for endo? I'm in so much pain all the time, this month I was in the hospital for a cyst on my ovary that had ruptured and caused me a lot of pain. I wasn't listened to at all and I wasn't well, they just sent me home with painkillers. I've had a cyst before but it didn't rupture and I was okay.

I'm just at a loss on what to do, I'm in so much pain all the time. They had me on 150mg of degestreol and a month later is when the ectopic happened so I'm not going back on the pill, all the hormonal contraceptives mess with my hormones as I have BPD so my emotions are all over the place anyway, contraceptives just don't work for me and everytime have made me bleed all the time.

Also I had internal and normal ultrasound and everything came back normal, although it never picked up any of the adhesions that they found in the surgery a year ago.

Anyone had anything similar ? Any ideas would be appreciated and any story's you ladies have would be great

Anyone ? X

This is all new for me, before I had my children my periods were no bother at all, but in the last few years periods have got heavier and more painful and I've recently been diagnosed with endo based on the fact that I have an endometrioma on one ovary. The ultrasound has not picked up any endometriosis but the consultant said you don't get endometriomas without endometriosis- so it must be there.

As my cyst has doubled in size in 6 months I'm due to have it surgically removed now.

Definitely ask for a gynae referral. They can do an explorative laparoscopy to see what is going on.

If you have a lap op do not just have an exploratory one. If endometriosis is present (and from what you write it’s likely to be there) you need to ideally go to aBGSE endometriosis centre, these do exist and I will find the link for you

This is really interesting and I’m really glad you posted. I had no issues with my periods either and was able to get pregnant both times quickly. A few months ago, about a year after I had my second, my periods became very heavy and very painful. Say a gyne who did a MRI and I have stage 4 endometriosis, including a large endometrioma and adenomyosis too. Everything is pretty much fused together and to my bowel, and I had no idea anything was wrong until a few months ago. I saw the doctor just yesterday to discuss and he said that back to back pregnancies and breastfeeding would have masked symptoms but it was odd I had no symptoms at all until recently. He said sometimes something just acts as a trigger and symptoms start. I suspect for me, it was my son not feeding as much. I now need to consider stopping my periods altogether or having surgery.

I have had more internal ultrasounds than I care to mention and NONE of them detected the endo throughout my uterus. Adhesions are sticky strands that tether organs together and they can only be removed surgically.

OP, just to add, the doctor original did just an ultrasound and saw only the endometrioma and wasn’t even planning to see me again for another year. He referred me to an MRI just to be thorough and that’s what showed how bad it all was.

Endometriomas are closely linked to endometriosis and can cause problems if they rupture.

https://www.bsge.org.uk/centre/category/accredited-centres/

Can doctors know what kind of cyst it is just from a CT/ultrasound ?

Thank you guys for all your replies, it's been a long journey of being fobbed off and given painkillers.

I'm worried that the ectopic pregnancy surgery they did, where they said they could only see adhesions on the bowel and no endo would mean that mo other gynaecologist would have another look seen as they said they didn't see anything.

I'm still resting at home as I've spent the from Sunday to yesterday in hospital in a lot of pain from the rupture of my cyst on my right ovary on Friday last week. Can the adhesions be from endometriosis? I've been told so much that it's not endometriosis that I've convinced myself all these symptoms and findings are just coincidence and that they're not going to find anything when they do eventually have a look

@Flowersinrain I'm a little bit terrified of what they might find when they go in to remove the cyst. But at the same time I'm not really sure how it could be that awful as compared to come experiences I've read about all my symptoms are pretty mild. Really, if I had gone on the pill a year ago I don't think I'd have any idea that anything was going on in there at all....

I have two centre in here near me. One is my local hospital. However I have gone private for this and am due to have the surgery at a private hospital in April. Now I'm not sure if I should ask to be referred to one of these places instead? If I'm referred on the nhs I presume it's a long long wait

Can I highly recommend Endometriosis UK, it is a patient advocacy group with loads of information on their website.
Endometriosis-uk.org

Although looking at my consultants credentials it says he ran the RGOC recognised endometriosis centre, was the clinical director for gynaecology for 5 years and he specialises in endometriosis, fibroids and chronic pelvic pain... so maybe I'm okay with him...

I'm still in a lot of pain from this cyst, does anyone know how long these ruptured cysts are painful for?

Can a ruptured cyst cause incontinece? Since yesterday I've been leaking a lot of wee like fluid, I'd say enough for me to have to change my underwear, never had this before and I'm a bit worried

I honestly don't know. This sounds like a situation where I'd be seeking medical help though

I'm going to the doctor tomorrow morning, going to try push for a gynaecologist appointment or to be referred to them :)

@AttilaTheMeerkat I can see you've sent me a pm but for some reason I can't seem to get to it

Never mind, I found it!

Hi OP

You've had good advice and I know how you are feeling.

So I'm going to recommend a surgeon called Peter Barton smith in London he is a wide excision specialist. You can get wide excision on the NHS but it's hard and the waiting lists are long.

Please don't reply on scans to show endometriosis I had all clear scans for my whole life and was stuck totally together.

My surgery was 6k which I put on a credit card, it was brutal recovery as wide excision is more intense surgery than the NHS laser.

So here's the thing the NHS will laser, and that will leave you with scaring, they won't get everything, they won't treat you well at all, laser is like putting a sticky plaster over the issue.

So if I was you I'd do a ton of research on laser vs wide excision and look for surgeons you feel you'd like to see.

Then you can ask for that surgeon on the NHS or fast track private.