Could this be endometriosis?

[arsedaggers]

I have suffered from an undiagnosed series of symptoms for almost 10 years and recently I have wondered more and more if it might be endometriosis, so I just wanted to post to see if my symptoms rang bells with anyone else?

I have always suffered from horrific period pain and have been on the pill since I was a teenager because of this, but have been off the pill for the last 2 years due to TTC and having a baby. Generally, when my symptoms flare up, I suffer from extreme fatigue that rest doesn't help. I also get constipated, bloated, get regular bouts of nausea (but rarely vomit), and stomach pain. The stomach pain varies from a burning indigestion type pain, to stomach cramps, and I also get sharp stabbing pains in what feel like my ovaries. I have often have what feels like a tearing pain in my lower right side- very comparable to the round ligament pain I had when I was pregnant! I still suffer from 2 days of incapacitating period pain during my period most months, even though my periods aren't particularly heavy, and often also have pain in my bum and it will hurt to have a bowel movement. I often have a feeling of mild cystitis during my period too, but any time I've been tested there has been no infection.

Over the years I have had - all of the blood tests, a transvaginal ultrasound, a cystoscopy to check my bladder, stool samples, Urine samples, tests for coeliac disease, all have been clear. No signs of any autoimmune disease, no inflammatory markers in my bloodstream. Doctors don't really take me seriously any more. The only things that have ever shown up are low b12 and low vitamin d, which I now take supplements for. When TTC I had one miscarriage, and then took almost a year to conceive.

My symptoms seem to have been ramping up again lately and I have started to wonder if my symptoms could be undiagnosed endo but I'm not sure if they fit. I'd like to be armed with a bit more knowledge before seeing the doc again!

Thanks in advance if you got this far 🙈

@arsedaggers, just read your last post, god that’s made my blood boil. I was the same, I stopped going to my go for pretty much anything because I felt like there was no point as they hadn’t helped me with my chronic pain and fatigue for years and made me feel like a hypochondriac. I ended up with pleurisy after the twins were born and went to the go for a persistent cough, he asked me why I he’d rather been in sooner and commented that I must have a really high pain threshold, I nearly lost it... this from the same gp who for years had told me period pain was normal I just needed to learn how to cope 🤬 the pleurisy pain was no where near the pain I used to be in from the endo

@Fussyeaternightmare Hi there!

If memory serves, you are a medical journalist/ writer on gynaecological issues?

I’ve just spent so many hours trying to work out what is wrong with me and have taken comfort in your common sense advice.

I hear you, @arsedaggers, I swing from being in the depths of despair, waiting for my condition to deteriorate at such a rate that A&E will be forced to admit me, to thinking that all this could Just be a combination of endo and fibroids.

I’m sick to death with the “you have fibroids and this is what’s causing the pain/discomfort so bye then”

Why should I (or any woman) have to tolerate this shit. It’s appalling.

@Hexinthecity no-one has ever mentioned Adenomyosis. Would that not have shown up during my laparoscopy?
But then even the gynae surgeon wasn’t convinced my chronic pain was endo, he agreed it was worth a laparoscopy because other things like it being gastro had been ruled out. They only found a minimal amount of endo on the left hand side, my pain was right sided. They did diathermy but put in my discharge report they weren’t sure if it was that causing my pain so weren’t sure if it would cure me! Fortunately it did so it must have been referred pain from left to right.

@ThePontiacBandit no adeno wouldn’t be seen during a lap. It’s really only diagnosable post hysterectomy when they can dissect the uterus. Essentially it’s like endo but trapped in the walls of the uterus. There’s no treatment other than a hysterectomy unfortunately but if you have endo then there’s a chance you may have adeno too. It can be diagnosed based on symptoms and pain down the back of your legs is one. Also a sense of heaviness / pressure / pain in your pelvis, along with all the standard endo symptoms. I had a hysterectomy for my pain after I was finished having kids and it’s genuinely changed my life, just wish I’d done it sooner, but of course that’s a radical treatment and one to be weighed up and considered very carefully

@Fussyeaternightmare that's another thing that gets to me. Whilst years of being fobbed off have made me feel as though I'm a bit of a weakling/moaner who can't handle normal life because I'm "perfectly healthy" and yet always in pain, in reality I know that I actually have a very high pain threshold, and have been since I was a child. I have broken bones and not seen the doctor for a week because I felt the pain wasn't bad enough to be a serious injury, I was induced via drip with my son and has 6 hours of having contractions every 2 mins before I even needed gas and air (and not because I'm hard core- I genuinely just didn't find them that painful for the first few hours), so whilst the years have worn me down, in my clearer moments I realise that actually, when the pain stops me from going about my normal life that means that it must be pretty horrific pain, but the doctors just will not take my word for it. It's the same with the fatigue- it's like people just don't believe you when you try to describe it. So many people told me that "you don't know exhaustion until you've had a baby". Well now I've had a baby and the tiredness isn't a patch on the fatigue I feel when my symptoms flare up!

@ThePontiacBandit I've read that the amount of pain doesn't necessarily correlate to the amount of endo they find and small amounts can cause huge pain. I'm glad that the survey improved your pain!

@Hexinthecity is it true that really heavy periods are more common with adeno than endo? One of the reason that one gp gave me for discounting endometriosis was that my periods aren't really heavy but I've since read that whilst it's a common symptom, it isn't guaranteed.

I'm also a bit worried because I was on the POP pill for years, and when I can off it to TTC my periods were really bad. My symptoms basically disappeared during pregnancy and only started coming back when my period came back in jan but I am still breastfeeding so my hormones still aren't back to normal. I'm concerned that when I stop breastfeeding that things will ramp up quickly- i don't want to go back on the pill as I had started having a lot of issues with it and i can't get the coil at the moment where I am because of Covid so I am a bit scared that things are going to get a lot worse.

Hi op
Your experience sounds similar to me.
I’ve always had short (2.5 days) light but incredibly painful periods that are mostly clots and gushes.
I had a stillborn baby at full term and had an emergency c-section: which involved heroic attempts to save my life and my uterus.
After about 6 months I had awful crippling pain.
After a colonoscopy, MRI, Ct scan.. all which my privately paid gynaecologist said probably wouldn’t help, I went for the laparoscopic surgery.
I had multiple adhesions from the c-section
Post surgery the constipation and agony trying to poo stopped.
But - they confirmed no endometriosis. I do have adenomyosis.
It gives me severe shooting pains down my legs, stiff back etc before and during my period.
I also have a blocked Fallopian tube.
I will probably have a hysterectomy at some point (I’m 46 and went on to have my only DC at 42).
Ask for a gynaecologist to consider adenomyosis.. it’s even less obvious than endometriosis

@Krazynights34 I'm so sorry you went through that, and thank you so much for sharing your story with me xx

@arsedaggers sorry I didn’t mean to imply that heavy periods were more common with adeno than endo, I think it’s like all the other symptoms with endo, there’s no correlation between the level of disease and the pain or bleeding. All I know if that I had extremely heavy periods, one notable day I literally filled my boots, stiff up and flooded so badly my feet were sloshing in the boots I was wearing. Gross. I also had huge clots. Mercifully all in the past now

OP and barefoot (and others) - Attila is right. Endo can’t be diagnosed definitively with anything other than a laparoscopy. Everything else is time-wasting, basically. This is why it takes YEARS for women to get a diagnosis.

I started my periods at 12 and they were always agonising. I soon learned to knock myself out with painkillers and accept that one whole week out of every month was basically written off because GPs repeatedly told me ‘pain is normal, just put up with it’.

At 43 I had a terrifying escalation in pain and was told I had an ovarian cyst. Even then a different GP tried to tell me she didn’t think the scan showed a cyst and I was just constipated! I had to go private to get a laparoscopy quickly because the pain from then was horrific (javelin arse included, what joy!), and hey presto - everything inside was a mass of adhesions from endo, bowel included. But the gynae (not an endo specialist) still tried to insist there was no ‘active’ endo there.

It took a course of medication to put me into premature menopause, then a Mirena coil to stop my periods, plus a (private) consultation with a proper endo specialist to confirm that I did indeed have Stage 4 endo and this was the way to stop it. I avoided hysterectomy and now I’m past the menopause so thank God it’s all over.

I feel so sorry that others are going through this and aren’t being treated properly. It’s a shamefully hidden disease.