What was/is your experience with endometriosis?

[Bookworm19]

I've recently started the process of getting tests done for possible endometriosis.
I'm curious about other people's experiences with endo.
What were your signs and symptoms? How long did a diagnosis take? How the things now? Please share absolutely everything and anything

What tests are being proposed?. The usual way endometriosis is diagnosed is through a keyhole surgery op called a laparoscopy. If they have not suggested a laparoscopy then I would be asking why that is. In my experience of endo, no blood test or internal ultrasound ever detected it.

My main symptoms were very painful periods, heavy bleeding, rectal pain, pains in pelvic area and sciatic pains down both legs and sometimes all this at the same time. With regards to pain it was the sort that painkillers did not touch the sides of and would have me curled up in a ball.

I realise now that my problems with endometriosis started upon onset of menses. It took around 17 years to be diagnosed, the internet did not exist when I was a teen so information was scare. My mum and GP had no idea and some GPS even today think that endometriosis is not common, infact it’s the second most common gynae issue seen in women after fibroids.

I was only diagnosed after I got pregnant (via ultrasound) - but it made sense of painful periods and other abdominal pain. As PP said, regular painkillers do absolutely nothing for endo pain. My ovaries were pretty fucked up and the doctors were amazed I managed to get pregnant, I was very much prepared that we wouldn’t have a second child.

Then the symptoms disappeared completely after my pregnancy and I got pregnant first time of trying second time round. Strange business!

I was diagnosed at 23 following having weeks and weeks of vaginal bleeding, totally irregular cycles and pain during and after sex. I had always had painful and heavy periods though, since I was about 11...

Had an ultrasound of my pelvis done because of the constant bleeding which showed a large cyst (20cm wide!) on one of my ovaries which needed removal.

During surgery, my bowel and ovaries/uterus were found to be all stuck together with adhesions; to the point they had to get a bowel surgeon in half way through the op as to stop me needing a stoma bag.

Thankfully, the cyst was found to be an endometrioma and nothing sinister, as far as I know, I haven't had any further cysts.

Since then, despite being told that TTC may be difficult, we've had a child and are now TTC no.2. Hope that helps. More than happy to answer any questions.

God where to start... years of pain, heavy bleeding, chronic anaemia, chronic fatigue and inflammation, fobbed off for years by gp ‘periods are supposed to be painful’ type crap. I used to get pain so intense I couldn’t stand and more than once flooded to badly I’d soak my clothes. I’ve had to wash out knickers in more public toilet sinks than I care to think about and always had to have a jumper to tie around my waist with me. Finally diagnosed by laparoscopy paid for privately after fertility investigations. Stage 4 deep and infiltrating. 2 massive surgeries, total perineal excision, obliterated pouch of Douglas, bowel bladder and ureter involved. 2 IVF one successful followed by a radical hysterectomy for adenomyosis and recurrent endo. Now on HRT and pain free for the first time in my adult life.

My periods were heavy and painful within 6 months of them starting. My Mum basically said it was a family trait. She did always ensure I had painkillers (including in my school bag). I was seen by the GP at 15 and given tranxemic acid which did help with the pain and heaviness. I went on the pill at 16 because they were still not great and I was having irregular and long cycles (2 week long period was my record). When I was in my 30s, we decided to TTC. Nothing happened after a year. We had tests but because they found a male factor issue, I had basic scans and an HSG but they decided it was all male issues. I did get pregnant eventually after DH’s issues were dealt with, but it took 2 years 8 months!

I had 3 separate occasions where I was admitted with sudden onset abdo pain on my right hand side. Of course they worry it’s my appendix so I’ve been admitted and scanned each time. All tests were normal aside from inflammation in my bloods, I still have my appendix! After a few month I still had Thai awful pain, loads of tests were normal (scans, gastroscopy, colonoscopy) I pushed for a gynae referral. Consultant agreed to do a laparoscopy and found endo. Within a day my pain had eased. I was post-op sore another the incisions and swollen but so much better. That was 3 years ago. My periods have been better but are gradually getting more painful. I need codeine for the first couple of days.
They are shorter and regular these days which is a blessing.

It took a long time to get diagnosed, but Covid had a hand in that.
I had painful periods, going to the toilet, endo attacks that would have me on all fours feeling sick with pain.
My GP sent me for 2 x ultrasounds and they suggested cysts on my ovaries. I then got referred to gynaecology. They sent me for an MRI. After a long old wait, I had my laparoscopy this week. They took a large endometrioma (chocolate cyst) out of each ovary and removed my left fallopian tube as it was strangled by endo (hydrosalpinx).
Dr now wants to put me on Prostap for 3 months which stops my ovaries, gives them a chance to recover and prevent the endo coming back.
TTC for 3.5 years so hoping this helps us!

Oh yeah so I should say - symptoms from age 14. Diagnosed at 36

@AttilaTheMeerkat
Already been for an ultrasound sound (all normal) and blood tests.
I've got a private consultation with gynecologist (Endo one) next month and GP has mentioned laparoscopy. I went in completely prepared so they couldn't fib me off again

I nver managed to lose enough weight to have the laparoscopy, but the doctor treated me as if it were endo. I was late 20's when they agreed that is what it was.

I had suffered years of agonizing pain, had to take time off work/school, from the age of 12, went on the pill at 14. It was years of throwing up, horrendous stomach pains, IBS, severe PMT, pain so bad that you just can't describe it, and others say "oh its only period pains" , . It only stopped completely when I went on the Depo injection when I was 30. When I came off the Depo 5 years later, it all returned with a vengeance. It was horrible having to write a letter to my male boss explaining why I was off sick for 2 days every month!

The pain was so bad that no painkillers would touch it. I was prescribed codydramol and naproxin, but all they did was made me feel floaty and still didn't kill the pain. They would never prescribe anything stronger.

When I was pregnant, the ultrasound showed cysts on my ovaries.

It all stopped when I had DD, and the doctor said that this can happen. Over 10 years later now, and the pain has never returned to that level that it was pre pregnancy.

Pain. All consuming overwhelming, life destroying pain.

But all tests normal so nothing wrong with me!

I've been suspecting I have endometriosis for a while but I can't get any help with it. GP done blood tests which came back fine and I had a scan where they found a dermoid cyst but said it was all fine and never saw me again. I might look into going private, especially as I'm TTC.
My symptoms are really heavy periods that have ruined so many occasions, large clots (sorry TMI), lower back pain that goes right down my legs, stomach cramps and an upset stomach. There's at least one day of my period where I can't function properly and I definitely can't leave home.

zizi the cramps down into your bum/legs is a classic Endo sign. It’s definitely worth getting it investigated. A lap and dye might be worthwhile if you are TTC. I went private to speed up my initial appointment (my local private hospital charges £150-250 for an initial private gynae appointment). I was offered the choice of private or NHS for the laparoscopy. It would have been £3k private! I went NHS.

It took more than 10 years for me to be diagnosed. In the end I'd have about 1 OK week in every four between my period finishing and ovulating. I had a hysterectomy and oophorectomy because by the time I was diagnosed it was too late for anything else - adhesions had stuck everything together so it all had to come out.

Signs and symptoms - pain which would leave me bent double, bloating, heavy periods, erratic bowels (bowel was stuck to womb).

I hope you can get diagnosed and treated quickly, OP.

I was very lucky I got diagnosed by chance 20 odd years ago. I was having keyhole surgery due to a twisted ovarian cyst and the endo was diagnosed during the operation. I had spent my teenage years with horrible irregular periods heavy bleeding. Pain in back and legs :( being told & thinking that this was normal!

Over the years I’ve had an laparoscopic op every 4-6 years for removal etc I have a lot of internal scarring. I’ve had two children and for the last 5 years have had the mirena coil which has been life changing and meant at this stage so far haven’t needed a hysterectomy which due to the internal scarring is probably my best long term solution. I don’t want anymore children but not ready for a hysterectomy (I’m only 43!)

My main symptom was foot pain. I've had attacks that brought on foot pain and classic symptoms like lower back ache etc.

I’ve had symptoms since I was 14 I wasn’t taken seriously till I was 28 and finally diagnosed with endometriosis whilst having a lap for fertility reasons, my symptoms include bladder pain (feeling like I always have a uti) back and leg pain, bowel problems, severe bloating, random mega heavy bleeding to the point it would literally run down my legs, painful sex ect. Was made to feel like it was all in my head as nothing showed up on my ultrasounds. When they opened me up I was covered in it. I’m currently on a waiting list with a endometriosis specialist to have more removed a year after the first lap.

I'm going through this now, and also through peri, my lap is on 7th Dec im 43.
Been fobbed off for years particularly the last 8 or 9 years been backwards and forwards with issues gynae and bowel which have worsened

I have severe debilitating period pain that goes into my legs
Rectal shooting pains
Nerve pain inside fanjo
Prolapses that have suddenly come on
Fatigue
Heavy periods
Bowel issues and ibs
Flare ups of body aches like flu
Other pain throughout cycle
I've had to fight to be listened to i put my foot down with doctor and she referred me to endo specialist who agrees definitely sounds like endo and looking at my notes was not happy it hasn't been investigated sooner. Feel free to pm me
I'm very anxious about my lap but it needs doing and long time coming
Hugs xxxx

I also get a lot of hip and groin pain esp left sided x

@VioletRose91 your symptoms sound exactly the same as mine. Mainly the uti symptom. Can I ask what your bladder pain felt like? I’m currently waiting for a lap but also under a urologist as I’ve had a burning/stinging type uti pain for years now.

@Bluebellfae

I know this is an old thread but I wondered how you'd got on since your lap? I have many similar symptoms and finally seeing a (private) gynaecological consultant this weekend. I'm hoping she will give me a transvaginal ultrasound but I know that often doesn't pick up endo so want to be prepared to insist on a lap to investigate. I've had a bad flare up of whatever is going on for the last 5 weeks now and been really poorly. Very hard to deal with with a full time job and 3 kids... starting to really hate my female anatomy and would like the whole lot out to be honest (I don't want anymore children)

Hi I've changed my username was bluebellfae, I had the lap and yep, was diagnosed endo it was all over my ovary and sacral ligaments. I had it treated during the lap, and things have been ok but recently begun getting symptoms again 🥺 so think it's back which I know can happen but think it's peri meno stuff adding to it all.

The lap went fine and I was fine afterwards, feel free to pm me how did your appointment go?

Hello! Reading this thread has been a godsend. I have all of these symptoms, including bleeding between periods. Scan showed an unusually thick endometrial lining, so I’m being referred for an investigation. Endo seems to be the likely cause, but it’s not guaranteed until they go in and make sure it’s not something else, or something sinister.

This thread is so reassuring as I’m seeing all the same symptoms I’m having, so it’s making me think it is endo

I have suspected but uncomfirmed as I won't do Lapro and have decided to manage it myself.

I am not sure why the UK won't follow europe and offer MRI!!!! Everyone I know in Europe had MRI and diagnosed that way. It makes me so mad.

Hi, is anyone on this thread still active?! I have questions! I'm 40 and at my limit with symptoms x