Suspected Endo Help

[Amy_P_1996]

Hi All,

Just wondering if anyone can help, I'm in the very early stages of being investigated for Endometriosis. I've been suffering for as long as I can remember with heavy periods, dehabilitating pain, throwing up, clots, constipation or diarrhoea however just thought that was normal for periods it's only recently I'm finding out that it's not.

About 2 years ago I was I'm immense pain all the time on my right side and pelvis, it was discovered I had Gallstones and my Gallbladder was removed. It was noted that I had quite a bit of adhesions. Removing the gallbladder however didn't get rid of my pain but I kept getting dismissed saying it's just pain from the surgery. I eventually changed doctors who have been brilliant and suspect Endo.

I've had ultrasound Scans but doesn't show anything apart from my right ovary being quite close. Due to the pain/wait lists I've used my health insurance and I've finally seen a Gynaecologist and she said she's not sure but would like to do surgery to check, part of me is now starting to question myself as to whether it is that and worried if it's not I still might not have answers. I'm just wondering what peoples experiences is. Currently I'm on the mini pill which has seemed to lessen the pain however I've now found its constant rather than a week before/when I'm on my period, I'm tried all the time, I'm spotting even on the pill, I find myself going the toilet alot and the pain is worse always after going the bathroom and I can't even wear my uniform as my belly is bloated so it's all too tight. When I research endo I don't really see much linked to these symptoms which is why I'm doubting myself now and reaching out to see what people think/what their experiences are.

Thanks

Amy

[Moon_maiden]

That’s great you are getting somewhere. Endorse doesn’t show on ultrasound most of the time unless really experienced, don’t let that put you off.

I’d be more concerned about Gynae, sounds as though they were too vague and don’t know enough about Endo. Do they have specialist knowledge if not I’d get a second opinion from someone who does. You need to make sure if you have an op they can treat and get rid off all your adhesions at the same time. I’ve had far too many surgeries and should have been less.

Your symptoms sound similar to Endo but they couldn’t confirm until op. I’d also see if you can get an MRI before op, Endo sometimes shows on this, and would give a better overall picture. You should be able to get this through Gynae/insurance. Another reason they sound like they have limited knowledge is they didn’t suggest it when you saw them.

[Amy_P_1996 in reply to Moon_maiden]

Thank you for getting back to me. She specialises in it from what I've read but I must admit the appointment was slightly disappointing. It seemed very rushed. She just read my referral letter and scan result the GP had done. Didn't ask about any of my symptoms or anything although some of that was on the letter and just told me I had 2 options surgery or pain relief and a hormone but she recommended surgery due to my level of pain and how long I've been suffering. She again said though my scan is normal and I would usually have something on the scan to suggest endo which is why I'm questioning myself.

[Moon_maiden in reply to Amy_P_1996]

At t didn’t sound a great appointment, you need confidence in the surgeon that they are open, honest and explain things to you.

For ultrasound whoever does the report meds to know how Endo shows otherwise it’s pointless. MRI would stop her going in blind, first surgeon who did mine thought it was just superficial without a scan but turned out to be deep and couldn’t do much at the time. He was surprised as to what was there, he did remove some though.

I kept questioning things as well, but I wanted to know for sure what was going on.

[ZiggyandBC]

Hey, it sounds like you’re in a lot of pain and I’m sorry you don’t really have any answers yet but it’s great that they’re investigating as it could be endo. I also had debilitating period pain but thought it was normal. I also experienced painful sex and spotting between periods/after sex. I did have an endo cyst show up on ultrasound so that confirmed that I had it but really you can only know by doing surgery so I think it’s worth exploring as it might just give you some answers about why you’re in the pain you’re in and hopefully it’ll help. I had a laparoscopy just before doing IVF and I found the surgery helped with the pain so it was worth having for me as well as knowing i have endo instead of not really knowing. Hope this helps xx

[Jem33]

hi I had gallstones and gall bladder removal 12 years ago and spent those years going back and forward to the doctor complaining of pain to be told, like you, it was to do with that surgery. They even put ‘unexplained pain’ on my painkiller prescription - which made me feel like I was crazy! My ultrasounds over the years were clear also but have now found out it needs to be a specialist in detecting endo to see it on ultrasounds - my sonographer was always a trainee 🤦‍♀️

So 12 years down the line I have stage 4 advanced endometriosis, bilateral endometriomas and a frozen pelvis with my ovaries stuck to uterus and all that stuck to my bowel. This was all diagnosed by an MRI last year but unclear if this was by a specialist in endo. My symptoms are still severe pelvic pain and bloating but I am on decapeptyl injections with tibilone so I have other symptoms related to that ie sore joints, fatigue, memory fog. I’ve been referred to a BSGE centre now to discuss surgery options and future treatment.

An MRI will map your pelvis for the consultant before surgery takes place so they can see where the problem lies, although don’t be deflated if nothing shows as I have read other ladies who haven’t had anything show but then found in surgery. You don’t particularly want to be having multiple surgeries, like the other lady advises, as it increases your likelihood of more adhesions where endo can grow happily.

My best advice would be to do lots of your own research before agreeing to initial surgery and ask all the questions no matter how obvious they may seem. Take notes so you can digest at a later date and follow up after if you’re not sure. Write down all your symptoms no matter how insignificant as there may be clear links for the consultant to put together.

Wishing you the best of luck on your journey and I hope you get some clarity earlier than so many other ladies stories I have read.

🤗

[Amy_P_1996 in reply to Jem33]

Thank you for your reply this is really helpful. I feel the same I try to explain my pain and talk to the Doctors about it and I get fobbed off depending on who I speak to. I get told its probably just back pain do some of these exercises, or your bloods come back normal so just have some pain killers. It's a constant battle with them and sometimes I question myself too I think am I really in pain, when is too much pain that I need to call/go to hospital. The last time they just kept saying take painkillers for 2 weeks despite me calling almost every day saying its not working until they eventually saw me and went oh your basically in tachycardia you must be in pain and sent me to hospital. But again as my ultrasound is "normal" I just get told your bloods normal, your scans normal I don't know what causing the pain take some painkillers and hopefully it will go. My mental health has suffered so badly from this now.

From everything I've read and seen I honestly believe it is endometriosis but I doubt myself now when I go to appointments and they're not sure. I think the only way to know is do the Lap so I'm going to take the risk as honestly the pain isn't worth it anymore.

[Banders93]

I’m so, so sorry you’re going through this. Reading your story is honestly like someone wrote about me! I was recently diagnosed with endometriosis at age 30 - I always suffered with incredibly painful periods but a couple of years ago it became constant.

I also saw a gynaecologist who was very reluctant to give me a laparoscopy. Over the course of the two years I had an ultrasound and MRI scan, both of which were completely clear. My gynae didn’t think my symptoms were indicative enough of endo. Eventually I demanded a lap and was diagnosed with stage 4 endo.

Obviously only you can know what you will go through to get answers, but for me the surgery was so worth it to know what I’m facing - it provides validation and helps you seek treatment better. Personally, I wish I’d demanded one years ago. If you do want one, your symptoms give you the right to demand it. It’s also a clinical fact that the only way to truly rule out or diagnose endo is a lap, not a scan - your gynae will know this and you can tell them you want to know for definite.

I can’t promise if you have the lap they’ll find endo, but it sounds likely, and that likelihood would be worth it for me.

Wishing you lots of luck and peace x

[Amy_P_1996 in reply to Banders93]

Thank you again this is helpful. I got to the point with all this starting to affect my mental health and gave up fighting but I'm not at the point where I'm thinking why should I suffer in pain so I am fighting for the treatment and stuff now.

[Hidden]

I had an endo specific ultrasound privately from a clinic on Harley Street in London - although I know we’re not allowed to name names.. they do exist. He was so well trained and not only told me where the endo was but showed them to me on a big screen and measured each adhesion. Then you’ve got all these findings written down and can move forward on the nhs even.. it may not save me a lap in the future but a detailed diagnosis like this really eases my mind.