What endometriosis symptoms fid you have and how did you get a diagnosis?

[user2466]

Hi,

Currently in the process of looking into whether I may have endometriosis, had an US on Wednesday and she said it ‘was nothing to worry about’ I then asked if she could see any cysts and she said no.

Ive experienced lower back pain, pain in the right side of my back, pain going down my legs pain popping and peeing at random points in my cycle, ovulation pain, fatigue, I did used to have very painful periods but this is something that has somewhat eased since having my DD via c section but I do have random months where it’s unbareabke like it was prior to having her.

From what I’ve read people pass out from pain which is something I haven’t experienced.

Just wanted to know what other people’s experiences are and how they got diagnosed as I just can’t seem to figure out what it might be if it isn’t endo.

Persistent lower back pain which I was told was due to a desk based job.
Spotting for up to a week before my period.
’Javelin arse’ as it’s termed on here.
Infertility.

My periods weren’t unduly heavy or painful. I was tired often, but who isn’t these days?

I had stage 4, deep infiltrating endometriosis with bowel involvement (and ureter, as it turned out). Pelvic organs absolutely glued to each other. Pouch of Douglas ‘obliterated.’

About 14 years between going to the GP with symptoms and getting a diagnosis.

@Decaffe How were you diagnosed?

Diagnosis came because I was persistent, really, but also lucky(?) timing. IVF hadn’t worked. By the time I got to the top of the queue to get a gynae consultant appointment at the hospital, I was able to tell him I’d had two unsuccessful transfers. I asked him for an exploratory laparoscopy and for reasons I still can’t understand, not only did he agree but it happened very quickly. He essentially opened me up, realised the extent of it, and closed me back up as I needed specialist excision.

If you want to, you can advance search my posts - the op was in Feb 2023 and I was posting on the IVF boards about the events that led up to it (and beyond!). There’ll be more info there than I can remember, I’m sure.

I ended up getting robotic excision and I can remember how strange it felt to not have any lower back ache afterwards!

You don’t have to pass out with pain to have endometriosis, if you have any pain that can still be a sign.

I know because I had no idea I had it until I had an internal ultrasound for fertility reasons. I get pain on the first day of my period and pulling twinges in my vagina but that’s it. I’ve got deep infiltrating endometriosis and chocolate cysts on one of my ovaries so it’s definitely there!

The other thing is endometriosis can’t always be picked up on an ultrasound. Mine was but I’ve had an MRI since and they said, even with both, there’s still question marks about the extent of mine as scans aren’t perfect.

If you’re in pain, that’s not normal. They need to figure out what’s causing it, don’t let them fob you off.

@rrrrrreatt thank you, I’ve been going to the GP for years and have been fobbed off but will continue to keep trying

@Decaffe thank you will have a look at your previous posts. I have lower back pain DAILY and they’ve not been able to figure out the cause and they just refer me to physio who just says that a lot of people get back pain and I need to learn to turn the volume down on it as there’s no cure but the more I look into it the more I’m starting to wonder whether the back pain is linked to endo.

i take painkillers every single day and during my period I take more than the recommended dose and have done so for years to be able to cope although I’ve never told my GP this as I’m too scared but when I speak to others I realise that’s not normal.

White-knuckle pain and multiple symptoms as described by previous posters. Years of being dismissed. Eventually went privately to a top gynae specialist. So fucking angry that it was the only way to get proper investigation and diagnosis.

@AmandaHoldensLips thanks for sharing. I defo can’t afford to go private so will have to wait it out on the nhs unfortunately

Endo is unfortunately very difficult to diagnose. I had scans, MRIs, etc done privately and they still couldn’t find endo even though I had a very obvious case of adenomyosis. It was only when I had a hysterectomy that the surgeon spotted endo on my bowels. I’m in my 50s and have had a lifetime of living with horrendous pain. 💐

alwaus had painful heavy periods from age of 15 but was told it's normal.

At 19 I was getting mid cycle bleeding as well
as painful heavy periods.GP
jush said it's normal.
A few years further on I started getting pain in my bowel and back and sharp stabbing pains like a knife shooting up inside me.

At 26 I was TTC . By age 29 I was having investigations for infertility and I was told that I had endo and would need IVF.

After 4 failed attempts at IVF we decided would probably remain childless.

Finally at 33 my GP referred me for ingestgations into my on going endo symptoms and I had a laparoscopy where they discovered it was very aggressive and I had laser treatment.

Within one month I was pregnant but miscarried at 9 weeks.

At 35 we decided to adopt and as part of that process was told I needed to use contraception. GP suggested a coil but referred me to gynae again as my endo symptoms were back worse than ever.

Had laser treatment again and then had the mirena coil put in. I've not had a period or any symptoms of endo ever since and am now 56.

I always wonder if I could have had a birth child if I'd been listened to as a young women and had my endo dealt with sooner.

Really painful on day three of period, like having to lie down and do nothing else level of pain. Could actually feel (what turned out to be) a cyst on my left ovary. I'd been running regularly but suddenly found it difficult. IBS and stress incontinence. Then I got quite bloated in the lower abdomen. In the May half term holidays we went to my parents and I was in a lot of pain, thought I had an ulcer. Saw GP when I came back and he took it very seriously as it could have been ovarian cancer. Had blood tests, pregnancy test, coil removed, CT scan, MRI. Keyhole surgery to remove cysts within a couple of weeks. Had to sign a form to say they could remove my ovaries if they had to but fortunately he only removed the cysts and found widespread endometriosis. He removed what he could but it was stuck to my bowel and bladder so he couldn't get it all as removing it can cause more severe issues. After that I went on progesterone only pill. Apart from more tissue coming out for some time after the surgery, every now and then in my wee, I haven't had any symptoms since 2015. Even estradiol/ethynestradiol hasn't brought it back. I think with me it seemed to be a reaction to the copper coil. Never had any problems with periods other than during the five years I had it in place when the endo was building up, and have never had any problems since. Never had any fertility issues - was diagnosed at 39, I'd had my two DDs and had really straightforward pregnancies. Didn't have heavy periods other than when the endo was building up. I'd had IBS after having DD2 but had connected it with post partum issues rather than endometriosis. It was so much better after surgery and taking desogestrel.

For me, the lower back pain was because of the bowel involvement. The endometriosis was tethering the bowel to the back of my uterus, pulling it taut. Hence the back pain.

Ultrasounds (of which I’d had many during infertility investigations) didn’t show a thing. At the very least you need an MRI and ideally an exploratory laparoscopy.

Part of my (private) diagnosis process was having a vaginal scan where they insert a probe thing. Again I was thinking - why the fuck have I never been offered one of these before? I had got to the point where the condition was so debilitating that I just couldn't cope with the pain any more.

Dd turned out to have severe adhesions with tethered ovaries and bowel but apparently no endometrial involvement. Diagnosed after a decade of tests and investigations into various conditions most of which have resolved after laprascopic surgery.

I got diagnosed almost by accident. I was getting excruciating pain around the time of period, not achey or crampy, very sharp pain on the left side of my abdomen. Many A&E visits later and I went private because I wasn’t getting anywhere. The consultant I saw ordered an ultrasound but said a few other symptoms I’d mentioned were consistent with endometriosis, heavy, irregular periods, a lot of nausea etc. The ultrasound showed a tangerine size cyst on my left ovary and the pain had most likely been it rupturing. The consultant said normally procedure was to leave it be and scan again in a few weeks to see any growth changes but given the pain he wanted to go in remove it. He said he would check for endo at the same time and remove what he found. Post surgery he said my bladder was absolutely covered, he didn’t understand how I hadn’t any urinary symptoms. He also said there was some on my bowel but he wasn’t qualified to remove it and since I hadn’t reported any bowel symptoms, it was up to me whether I did anything about it.
That was 3 and a half years ago, I’ve not had any more of the pain so I’m going to assume there are no more cysts. I still have heavy and irregular periods but the pill works really well for me so I’m on that. I came off it for a little while to try for a baby and conceived no problem at all.

Thank you. A lot of the symptoms for many of the posters seem so severe. It’s so sad that it’s so difficult to get help and support for a condition that impacts most of us on a daily basis. Hopefully I can get some answers too as I don’t know what else could be causing my symptoms

Decades of very painful periods from age 12 - repeatedly told it was 'normal. Then in my late 40s, had onset of sudden pelvic pain so bad I almost passed out. The GP wanted me to get an ultrasound asap and an ovarian cyst was found.
Pain then ramped up until monthly I was in excruciating agony. I switched GP; the new one kept tells me to 'wait and see' (for what??) and wouldn’t refer me to a consultant on the NHS. Basically I diagnosed myself and suggested endometriosis after extending research as nobody was mentioning it.

Finally I went private and had a diagnostic laparoscopy. Even then the gynae said I did have endo, but claimed there was no active disease, which seemed bizarre as everything inside my pelvis was stuck together and he had to cut it all apart. I had a Mirena inserted, and Zoladex injections to put me into premature menopause for 6 months (which was pretty terrible) and thought I might have to have a hysterectomy.
At least the Mirena stopped the pain and I then found a proper endo specialist - still private, though - who took one look at the scans from the first gynae and immediately said 'you've got active Stage IV endo'. It felt like validation but bloody hell, I had to push it all the way and paid for treatment because frankly the NHS wasn’t interested.

I feel lucky the Mirena carried me through my actual menopause and the worst of the awful pain never came back. I avoided hysterectomy. But tbh I feel my insides are shot and I dread to think what’s going on in there - I still have bowel issues and a lot of vague discomfort.

I’m not sure if this is linked but does anyone have pain in their c section scar? Not sure if it’s an endo thing but gosh I feel like I’m falling apart with all these aches and symptoms