Endometriosis & Adenomyosis discussion thread

[soymilk]

Here's the thread i've been waiting for! Interested to know if anyone else who suffers from Endometriosis also has digestive problems too?

p.s sorry if you're an Endo sufferer - it is truly shit!

 

[Libbyaugust737]

I did it. I've set it up and posted my first welcome post. I've also got an email address for it so people can post their stories - anonymously if they prefer - so that I can post if people email. Get different stories and experiences out there.

thelittleyellowribbonxx.wordpress.com

 

[Inforapenny]

Following discussion in another thread this one is for those of us with endo to discuss our symptoms and how we manage them, surgeries etc and general moaning!

I have stage 4 endo, pretty much everywhere, first symptoms at 14, diagnosed at 33. Also have Adeno. And mild PCOS. Currently waiting on another surgery.

Thank you for the thread IndominusRex

I too have stage IV endometriosis. Main issue is my bladder and bowel
First symptoms around the age of 20
Fobbed off for years
I am now 37 and have it severely and it is incredibly debilitating.
I only got diagnosed last year having been taken to A&E with suspected appendicitis or food poisoning.
However I needed a week in hospital on the bowel unit. I was diagnosed with an infected bowel due to complications of my endo
Initially diagnosed with diverticulitis (I don't fit any of the criteria) then Crohn's, then suspect bowel cancer then finally after scans, MRI endometriosis.
Years of seeing GPs and specialists not one medic linked it with ovulation.
Not one person in A and E and a week on a bowel unit asked about my mensuration cycles.
It was my mum, a nurse who suggested it and then everyone including my bowel consultant was like oh yeah

I'd love to hear other stories. I find it quite a lonely illness to have.

And I'm currently waiting bowel surgery

 

[Ilando]

Exact same as me hun, I was on antidepressants for years and it was only when I finally got my surgery at 28 and my symptoms started to ease I was able to start coming off them. Hope you don’t mind me asking but did you get pregnant naturally?

I have to say though that I didn’t really struggle getting a diagnosis it was my own fault for putting it off for years just thinking that I had ‘bad periods’ which really made me depressed but it got worse and worse. When I first went to my DR they said I maybe had an infection (!) and put me on antibiotics which obviously didn’t do anything then I went back and they referred me straight away for ultrasound and gynaecologist and I had my surgery 3 months later. I still suffered for at least 2 years after the surgery but not as bad as before. Last scan with the fertility clinic they said I have a tiny bit of endo there but they aren’t concerned about it.

Don’t mind you asking at all we were on the waiting list for IVF. It was classed as ‘unexplained infertility’. I’d had some tests while under anaesthetic having the endometriosis treated and they had showed my tubes were fine. We conceived naturally last year but I miscarriage. Unfortunately, the miscarriage was horrendous and I’m convinced that was down to that part of my body being so messed up.

I’m now in my second trimester with my second pregnancy. I’ve looked pregnant for years as bloating is one of my main symptoms of endo so no really change!

 

[IndominusRex]

Following discussion in another thread this one is for those of us with endo to discuss our symptoms and how we manage them, surgeries etc and general moaning!

I have stage 4 endo, pretty much everywhere, first symptoms at 14, diagnosed at 33. Also have Adeno. And mild PCOS. Currently waiting on another surgery.

 

[Ilando]

I’ve finally found a positive to having endometriosis for years… my side effects of giving birth are nothing to the pain of endo.

The midwife couldn’t believe how little fuss I was making over the bleeding and stitches- well, they are a minor irritation compared to what I usually go through every month.

Sending hugs to everyone who is struggling xxx

 

[Ilando]

Glad I’ve found this thread. Like most women with it, I’ve suffered for years without a proper diagnosis.
Thankfully, I found a consultant who was really sympathetic. Two operations have helped get my symptoms under control. I’m now pregnant with my first baby but my endometriosis has made my mental health so much more difficult. I hate anyone examining me, hate ultrasound scans etc due to associating them with the misery and pain of the last few years.

Huge empathy with any of my fellow sufferers. It truly is a miserable and isolating condition xxx

 

[Quarrantinemadness]

Anyone had endo deep in their bowel? Did they manage to get rid without a stoma needed?
1st diagnosed in 2018, had removal by laparoscopic surgery. Tonight had the worst news (I realise it could be worse). My insides are a mess, and that’s from what they could see on an internal and external ultrasound. My consultant is meeting with some kind of medical board to present my scan (and MRI which I’ve been booked in for Thursday morning) to some bowel surgeons. Thought I was only going back for a follow up as I have a 7x7 cm cyst on my left ovary, 4cm on right. That seems the least of my worries now, although still needs to be checked it’s not a tumor, he thinks it’s an endometriomas though, so fingers crossed.
I feel so sad, I always think people think I’m a moaner, but I genuinely am in pain. My pouch of Douglas is obliterated, I have stage 4 endo now. Also have 0.7 endometrium. Worryingly, I was scanned a year ago and there was nothing so to me it seems so fast. At the moment both ovaries, bowel, and uterus are all stuck together.
He asked where I was in terms of kids, I don’t have any, was previously told very unlikely, I have PCOS too. The consultant said he would do what he could to save my ovaries this time round. MRI will also look at my fertility (not sure how, there was a lot to take in). If I’d have said I’m done with kids I think he would’ve been telling me hysterectomy would be best. I’m mid 40’s, just don’t think I can accept that mentally.
Anyway, sorry to moan

 

[Ilando]

I realise this is a sensitive post given that endometriosis can cause issues with fertility etc so I hope I don’t offend anyone (I’ve had my fair share of fertility issues too).

I’m 5 months pregnant with my first. My last surgery for endo was 18 months ago. Recently, I can feel the familiar pain in my left hip is back and I know it’s endo reoccurring. It’s not a problem in daily life walking, sitting etc but causes lots of pain when I go to the loo!

It’s making me so nervous as there is no way I can give birth naturally. The strain of going to the loo (tmi!) is enough to make me feel faint when it’s at its worst. I’m dreading mentioning it to my consultant as I know they’ll be really dismissive like they usually are with everything endo related.

No real reason for my post other than to vent x

 

[uberoblique]

I had endo removed last year after 2 disastrous IVF rounds. My pelvis was “frozen” with all my pelvic organs glued together, and endo was wrapped around my ureters and on my diaphragm as well as all the usual places.

I’m someone who didn’t really suffer a lot of symptoms & only found out because I’m infertile however I didn’t know it wasn’t normal to need Naproxen for my periods. I’ve taken Naproxen monthly for nearly 20 years without even thinking twice. Apparently most women’s periods don’t hurt at all!

There’s an excellent Facebook group “Endometriosis Guidance and Information Resource UK” which is very helpful for navigating the NHS. There’s specialist centres within the NHS for treating endo & a prescribed NICE pathway, but hardly any GPs know about them/it.

 

[Pacho]

Hi all! And thank you for starting this thread
I’ve been referred to the gynaecologist to investigate if I have endo. I’m 99% sure I’ve had it since being a teen.
I’m 27 and have been going to the GP’s and A&E since I was 14 with my symptoms.

My symptoms are: incredibly heavy and irregular periods, a mix of constipation and diarrhoea, pain in abdomen, lower back and thighs, painful sex, bleeding after sex, spotting, nausea and vomiting for hours on end whilst on my period, low moods, fatigue, hair on my lower back and constant uti’s.

I was referred back when I was 18 but it was an awful experience. It was my first time going and in the room was 2 male medical students which immediately made me uncomfortable. (I’d be totally fine with that now but at 18 it was very off putting) I told the gynaeo my symptoms and she just shook her head and accused me of making myself sick to lose weight. She then made me undress behind a curtain and told me to lay on the bed. She didn’t tell me what she was going to do and pulled out a huge metal speculum and said “I need to swab you for sexually transmitted infections”. The speculum was the most excruciating pain I’ve ever felt and burst into tears and couldn’t go through with it any longer. She shook her head and said “you really need your swabs doing”. She sent me for an MRI which came back clear and didn’t hear anything else again.
I later researched and read MRI scans can’t even pick up endo.

I’ve since managed my symptoms with the mini pill (continuous) and mentioned my symptoms in passing when I had my last pill check. A couple of appointments later and I’ve finally been referred back. I feel confident enough now that I’m almost 30 I won’t cry and I will demand a laparoscopy until I am blue in the face.
I am sorry for the essay and thank you if you are still reading, but my main questions are:

- Has anyone else had an experience like mine at 18?
- Will my next appointment be similar? Will they just want to swab me for sti’s?
- How long did it take you from initial referral to diagnosis?

Thank you and sending lots of love to you guys x

Hi

I am 30 and was diagnosed with stage 3 via laparoscopy 2019 after 12 years of being told 'Periods are painful, deal with it'. The surgery went well and along with taking supplements from my naturopath, getting monthly acupuncture & chinese herbs I am managing very well thank god. Having said that since the surgery I was very nervous having people near my stomach or lady area.. Having to get smears/paps was an ordeal because I literally would clam up anytime anyone went near me. We are currently with a fertility clinic and I have to get transvaginal scans 4 times a month, once is day 3 of my cycle. It hasn't been pleasant. I remind the gyne everytime to go easy and be gentle as with endo I am more sensitive than most women down there. Last month I had the most horrific experience of my life with my second IUI. I will not get into detail as I do not want to put anyone off as my experience is not how it should of been.

Basically I completely understand where you are coming from not wanting to be examined after a traumatic experience. The only thing that can diagnose endo is a laparoscopy. I am not sure what country you are in but there is a blood test called CA125. It is a cervical cancer marker test, but studies have shown women with endo have an elevated level of this. (Not elevated to a cancer level, but not zero like an endo free lady. Example my last score was 23 as the endo is still on my bladder and bowel) You could ask for this, but again it is not a diagnosis. The gyne that finally diagnosed me did not do a single other test on me. Based on my symptoms he booked me for a laparoscopy. But during the 12 years before that I had countless referrals, all of which I had transvaginal scans and ultrasounds, even though they are pointless and don't show up endo. I've never had any swabs etc during any referral tests. I hope this helps

Hi all. Im 29, 30 in November.

Been suffering like you all since I was a teenager, years of fighting with doctors and consultants for a diagnosis to be told at 21 it was all in my head. Fast forward 2 years and my current partner brought me to a&e after passing out due to pain 3 times and a cyst was found.

I was diagnosed through surgery 3 weeks later with stage 2. I have had 2 surgeries total needing another currently.

I had a missed miscarriage last may and currently ttc.

I have been in agony the past 2 days but today I am dying I have tried every painkiller in the house and hot water bottles and nothing is easing it. Im at my a&e trip point but due to covid I'm scared to attend..

XOXO

Oh I do not miss those trips to a&e with the pain! The absolute worst.
Best of luck trying to conceive. We are in the same boat. A year trying with a fertility clinic. Please have your progesterone levels checked to see your estrogen to progesterone ratio. Both should be checked on day 19-21 of your cycle.

Us women with endo are high risk for miscarriage due to the fact we are estrogen dominant and usually have a poor estrogen to progesterone ratio. Progesterone is needed to sustain a pregnancy. Every month after ovulation is confirmed I have to take progesterone suppositories to help get and sustain a pregnancy. I have been told if we do conceive I will need to continue this until at least 13 weeks. You may already know all this so please ignore if so. Baby dust to you <3

 

[Ilando]

Keep us updated. My main issues are my bowel and Bladder.
I spoke to a temp gynaecology consultant this week and he was just rubbish tbh and was like meh are you sure it isn't crohns.... He hadn't read my medical history he just wanted to get me off the phone. I realise how make or break your consultant can be.
And he was like get pregnant and the pain will go away. Thanks mate.

the get pregnant comment shows how much work still need to be done educating so called professionals.I’m currently pregnancy and surprise surprise my endometriosis hasn’t been magically cured. You can see it on every scan I have and I’ve been told I will have to have a c section due to the damage in my hips from it!

 

[loubylou50]

Does anyone know if endometriosis pain can run under your leg and bum as well as in the hips? I feel like an old granny and im only late 30s. Its hard to even sit for long periods due to the discomfort under my left thigh . Just wondering if anyone else has experienced this

Yes absolutely, I get this type of pain a lot! Across my lower back and down the backs of my thighs, it makes my legs feel shaky. I get a lot of general joint pain and fatigue too, all inflammation-based I guess. I was officially diagnosed with Endometriosis and Adenomyosis in March after a laparoscopy and excision - after 10+ years of pain and 7 years after I first went to the doctors!

 

[queenamber]

So happy to have found this thread. I've been suffering with pelvic pain since March, have been seeing a gynecologist (I'm in the US) and I still feel no further forward. I'm going back on Monday and demanding they look into it further. A lot of my symptoms seem to line up with endometriosis (also have lower back pain, pain in rectum, and IBS-like symptoms). It's battered my mental health this year (on top of everything else going on in the world!) and I feel like no one really understands the daily toll it takes on your mind and body.

 

[loubylou50]

I havent read this whole thread but I think I have endo and my GP keeps fobbing me off, so much so that I stopped going. My period lasts about 4-5 days but the lead up to it, I get really bad lower back pain and period pain. The day before I come on and the first day of my period is always the worst. Feels like my womb is gonna fall out. I went to the GP and spoke about this along with my very heavy periods & she told me to take painkillers for the pain and prescribed me with some pills to help my blood clot and reduce the flow which helps a bit but not massively. I stopped going the doctors in the end as I was just getting told the same thing but from a different gp. My mood before it comes is LOW, the pain is something else, it's like labour pain.

I also get pains in my bum? I dno, but I have IBS too. I know my triggers and avoid dairy n such. Sucker for a mcdonalds milkshake tho which is a killer

I really feel for you, this sounds so similar to me. It took me 7 years to get diagnosis, and I’d experienced milder symptoms for years before that too. Unfortunately most people’s experience is that you will have to jump through a lot of hoops to get investigated thoroughly and the proper diagnosis and treatment. Along the way I had: 2x endoscopy, 2x colonoscopy, 1x cystoscopy, bowel MRI and various ultrasounds as no one would listen properly to my symptoms so I ended up going all round the houses and getting no results! Eventually I begged for a Gynae referral and even then all they wanted to do was give me the coil without investigating. However I’d had enough by then and knew I wanted a laparoscopy to get a diagnosis for sure, so I refused a coil and insisted on surgery. Eventually had it last year where they diagnosed endometriosis and adenomyosis, and removed areas of adhesions! It was a real ‘hallelujah’ moment when I came round from the anaesthetic and realised, finally I had an answer to all the years of pain!
So definitely do keep pushing, keep going back to your GP so it’s all documented. Write notes before you go in so that you don’t forget anything that you’ve been experiencing. Also meanwhile, I highly recommend getting a TENS machine to help with your pain, I got one from Amazon and really helps with a bad attack. Alongside strong pain relief!

 

[IndominusRex]

14 years here, ignore that doctor and persevere. It’s frustrating and you shouldn’t have to but you know your body best.

 

[just_stir_it_una]

Hi Very happy to have found this thread.
I’ve just been to see an endo specialist team today, and they say they’re 99% certain I have endometriosis, and it has possibly spread to my bladder and bum. They found a cyst on my ovary, and I’ve been referred for an MRI of my abdomen. I was told I should prepare myself mentally for surgery. And honestly, I am shit scared sorry if this is the wrong forum to share that, but I’m just feeling so weird and sad and incredibly overwhelmed!!

 

[Inforapenny]

Definitely get a fertility app to track ovulation and your cycle. This basically got me my diagnosis.
I think ibs is always rolled out as the answer to everything, it's a lazy diagnosis.
About 15 years ago doc's said it was IBS but got progressively worse.
I get so ill now I've ended up in hospital with bowel complications due to endo . So it's really important your doc doesn't dismiss it as just IBS because you could be helped now before it gets too chronic.
I don't want to scare anyone I just feel passionately that women's health is always side lined and if I'd got help 10+ years ago I wouldn't be in this situation.

Water and peppermint tea help me and exercise x

 

[Interested21]

Hi all. Im 29, 30 in November.

Been suffering like you all since I was a teenager, years of fighting with doctors and consultants for a diagnosis to be told at 21 it was all in my head. Fast forward 2 years and my current partner brought me to a&e after passing out due to pain 3 times and a cyst was found.

I was diagnosed through surgery 3 weeks later with stage 2. I have had 2 surgeries total needing another currently.

I had a missed miscarriage last may and currently ttc.

I have been in agony the past 2 days but today I am dying I have tried every painkiller in the house and hot water bottles and nothing is easing it. Im at my a&e trip point but due to covid I'm scared to attend..

XOXO

 

[uberoblique]

Hi everyone - reviving this thread because I'm at my wits end. I had an MRI a few weeks ago as my gynecologist is starting to suspect endo after 12+ months of chronic pelvic pain and ruling out various other things. I got a call from her today and she told me the MRI didn't find anything "abnormal". So now I feel even more lost, still in pain with no answers. Should I be demanding a laparoscopy or is endo basically ruled out from not finding anything on the MRI? Would be really grateful for any advice.

Definitely not. I had a clean MRI 2 days before surgery. My surgery was 4 hours long as I had endo to remove in my pelvis, bowel and diaphragm and my pelvis was “frozen” (gummed together with adhesions). My surgeon (one of the well known ones) was surprised about the MRI but said it happens.

I’d get a hold of the NICE guidelines for endometriosis as they do (from memory) recommend a diagnostic laparoscopy on the basis of unresolved symptoms.