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 🙈

Hi op,

I get so many of these symptoms too. I know that I have two 4cm fibroids and multiple others but I share so many of your symptoms. I have just had a clear transvaginal scan and am none the wiser. I'm not wondering about Endo. I have the following:

back tightness
painful periods but not particularly heavy
awareness of something in the lower part of my cervix
different types of pains in both my pelvis and abdomen - can be all through the month.
Ovulation is now painful over a couple of days.
Javelin arse during ovulation.
no noticeable bloating but a gurgling tummy.

I hope that Hellsjinglebells (I think that's her name) comes along as she really knows her stuff.

@Barefootinthecarpark that does sound really similar to me, although I do get very bloated sometimes. I've also noticed that mine can be at any time of the month, although I've started trying to track it better so that I get a better idea of patterns. Can I ask why you say you are not wondering about Endo? Is it that you don't think you have it? Also do you mind telling me how you knew you had fibroids/how they were diagnosed?

Sorry, it was a typo. I DO wonder about endometriosis. I’ve had back tightness since 2019 and a 3 week episode of low level period ache feeling. This has occurred on 3-4 different occasions since July 2019 to now.
2019: I went to GP, had abdominal and trans vaginal scan (age 43) and was diagnosed with multiple fibroids, nothing on ovaries and thin endometrial lining. CA125 test was normal.
Back ache has come and gone- GP put down to aging although would not accept that I was in Peri. I have tons of peri symptoms: night sweats between breasts, occasional ache on sides of jaw, grey wirey hair at parting, painful knees, crooks of arms, thighs, hot feet at bed time.
Fast forward to now: just had another trans vaginal scan as had 6 weeks of low pelvic ache. Feels like there is a something there when I bend over. Scan shows tiny millimetre changes in fibroids from 2019. Have two similar size fibroids and loads of small ones. Radiologist said no abnormalities could be seen.
Gynaecologist proded around my abdomen and said that my uterus was twice the size it should be, said he could feel the fibroids. Did an internal examination and kind of rocked my pelvis and said it was fine.
I’m a bit in limbo now. GP and Gynaecologist both said that fibroids could cause this daily discomfort. I’m hoping that they are right!

Acne not ache!

I’m contemplating speaking to the GP (again) and insisting on another CA125 test. Not sure that they will agree.

@Barefootinthecarpark are they planning on treating your fibroids or are they just fobbing you off? It's sounds so uncomfortable!

I hasn't heard of CA125 test before you mentioned it. Is it a blood test? I might request it from my gp at my next appointment. So far all I have had regarding endometriosis testing is one ultrasound about 6 years ago. Annoyingly, I believed them at the time when they said that the clear ultrasound meant I didn't have it but I have been doing a lot more reading about it lately and realise that it often doesn't show up on an ultrasound. It's so frustrating that doctors seem to know so little about it!

CA125 is to look for ovarian cancer markers. Unfortunately, fibroids will also raise the figure.
Annoyingly, my GP said that endometriosis would show up on my ultrasound but I’ve read so many times that this isn’t true! Apparently, it can only be found through biopsy.
I’m so frustrated because I’m trying to take care of my health and report symptoms that could be malignant or benign but I’m getting nowhere.
Even the consultant said that you don’t get pain with ovarian cancer. A cursory glance at respected ovarian cancer websites will tell you that that isn’t true!

Basically, I have a diagnosis of fibroids but I can’t quite align that with my daily discomfort so I’m wondering about other conditions. 🤷🏻‍♀️

I have health anxiety because I’m anxious about being ignored!

For both of you above posters endometriosis cannot be ruled out at all here. Any pain that is cyclical in nature and or gets worse up to and including menses should be checked out thoroughly to see if endo is the cause.

I had a GP tell me that endometriosis is not common; actually its the second most common gynae problem seen in women after fibroids. Its very common and is very much underdiagnosed.

It is usually diagnosed through a keyhole surgery op called a laparoscopy; I apparantly had many of the symptoms associated with endometriosis (you've listed many of those between you both) yet it was never mentioned and was only found after surgery was performed as part of treatment for subfertility. Until this point I had many blood tests and internal ultrasound scans and NONE of those ever detected the endometriosis that was present throughout my uterine cavity. It can and often does go to other sites throughout the body and bowel, rectal and bladder involvement are not unknown either. A week or so post my laparoscopy type op I saw the consultant again for a follow up and he showed me the photos taken of my uterine cavity; it looked like a Jackson Pollack painting. No wonder I had been in pain all these years. My periods were painful (and sometimes heavy) from onset of menses at 14, my friends did not have periods like that.

I would be asking your respective GPs for a gynae referral rather than they mucking about with more blood tests. You need to speak to someone far more specialised about your symptoms like a gynae (and someone preferably who works at a BSGE centre) than a generalist like a GP.

These websites are also informative:-
www.endometriosis-uk.org/

www.bsge.org.uk/endometriosis-centres/ (look under endo centres)

Thank you so much, Attila (I’m so sorry, arsedaggers, for taking over your thread) that’s really useful.
I’m getting myself into a panic because I keep returning to the idea of OC. I know that I’ve had two clear transvaginal ultrasounds but I just can’t reconcile fibroids with daily pain/ache.
From an Endo perspective, my pattern presents like this:
4-5 day period, brown spotting show day before.
Painful first two days- becoming more so during the last few cycles.
Break in bleeding on day 3, say, then back again for a day or two after.
Some low level pain/ache just above pubic line and central, spreading out left and right, that becomes much more noticeable as I get closer to ovulation.
2-3 days across ovulation of lower pain, and funny pains from what I believe are where my ovaries are.
Javelin arse some months- during ovulation time.
It’s uncomfortable to lie on my front as this area feels full.
I have suffered with back tightness for almost two years.
I get occasional aches in hips- again over two years.
Then discomfort decreases again as the days go on until next period. Low level “awareness” is there daily.
I only managed to fall pregnant once in my early 40s but miscarried early on.
Sex is not painful
No bleeding after sex or between periods.
Teenage period pain was HORRENDOUS but got better with the pill/coil.

@arsedaggers is this ringing bells with you?

@AttilaTheMeerkat given the pain pattern, does this still sound like it could be endometriosis?

TIA

Can the symptoms endometriosis suddenly exacerbate like this at 45?

Any advice would be greatly appreciated.

All my internal ultrasounds were clear (and I have had more of those than I care to mention!). The endometriosis was not detected on those because the deposits are so very small.

As stated before my problems with endometriosis started from the onset of menses at 14. The initial period was painful and they remained so; sometimes the pain during menses was searing and left me feeling wiped out. Painkillers and hot water bottles did not always help either, at best they gave some sort of short term relief.

I used to get brown stringey type blood (this is certainly a possible indicator of endo) and red blood flow too which stopped and started of its own accord.

I also had hip pain during late teens and early 20s that was cyclical in nature. Am no expert but this should be further investigated by a gynae to see if endometriosis is the root cause of these particular symptoms.

@AttilaTheMeerkat

Jackpot! There is a specialist very local to me who I’ve tracked down to a private clinic. I’m going to see if I can self refer.
Thank you so, so much.

Yep, brown stringy discharge around ovulation sounds familiar. I’ve been putting that down to hormones and age.

I was diagnosed with ‘gynae issues’ when I was FOURTEEN, I am not TWENTY FOUR and still none the wiser to what is going on. I was in hospital at one point for investigations, told possible endo but nothing further was done. Women’s pain/issues are never taken seriously by doctors especially when it’s to do with gynae issues.
My advice would be that if you can afford it to go private. It will cost you a bit of money but it will probably be worth it. I doubt you will get any further with the NHS. (That’s not me hating on the NHS, it’s just the case. Overworked and understaffed).
Sorry you’re going through this I know it all too well.

I have similar symptoms. Severe period pain from the age of 13. Pain includes abdominal cramps, aching in bum and legs. Also diagnosed with IBS with exclusion tests but it’s worse around my period.

I’ve been admitted to hospital three times with ?appendicitis (lower right sided abdo pain). I’ve had ultrasound scans, CT, gastroscopy, colonoscopy, cystoscopy...all they found was a hiatus hernia. The last admission found nothing but I was in severe pain. After a few months (!) I pushed for a gynae referral after a frank conversation with my lovely GP where I said I thought it must be gynae because everything else abdominal has been ruled out! Gynae consultant agreed to do an investigative laparoscopy to look for endometriosis....they found it. They burnt it away. I was post-op sore from my surgical incisions but within 24 hours the chronic pain I’d had for 6 months settled.

Obviously there’s a worry it’ll come back again. My period pains were better but have gradually got worse again in the 3 years since my surgery. If it does return, I’ll probably be admitted again (because as the consultant said “One of these times it might actually be your appendix”) but at least now I know I have endo, if it becomes apparent my appendix isn’t about to pop, then they’ll realise it must be the endo. Treatment wise all they will offer is hormonal contraceptives but I don’t really get on with any of them - can’t take the combined pills because I get migraines/am too old/too fat. POP made me feel awful, flight or fight, greasy hair, spots and the Mirena made me really unstable mood wise. So for now I am just doomed to dose up on painkillers and use a wheat bag each month.

So in conclusion, in your position I would absolutely push for a gynae referral!

This is all ringing so many bells. My period always starts with the brown stringy blood you mention. All of the hip pain, IBS symptoms etc all way too familiar. I was also diagnosed with grumbling appendix at one stage even though there was no real evidence that it was my appendix. I was lucky enough to get pregnant again after my miscarriage and have a healthy baby boy who will be one in the summer- my IBS symptoms also all disappeared completely during pregnancy and have only returned in the last couple of months.

I know from tracking my cycles and ovulation when trying to get pregnant that I had a very short luteal phase which, having just done some research, I also believe can be closely linked to endo. As can migraines, which I have had since I was a teenager.

Thank you all so much for sharing your stories, they have really helped and I will definitely be pushing for a referral to a gynae in a BSGE accredited hospital. If not then I will definitely consider going private.

@Barefootinthecarpark I hope you get some answers soon too- I will keep you updated about how I get on!

@arsedaggers absolutley you should be asking for gynae investigations for Endo based on those symptoms. @AttilaTheMeerkat has linked to the bsge website. In your position and with waiting lists as they are I’d absolutley look for a local specialist and ask for a referral letter from your go and pay for a private consultation to discuss investigations. Be aware though that not all specialists equal! Hence going through the bsge, if your go refers you to a gunae on the nhs you may come across some total bullshit. It’s amazing how many gynaes know nothing about won considering it is so prevalent and can have such a huge impact on quality of life, in fact it’s a disgrace. Things to object to if your gp says them..

‘endometriosis doesn’t affect fertility’ (bullshit)
‘it can be seen on an ultrasounds ’ (bullshit) ‘it can be seen on an mri (bullshit- i have first hand on this, one specialist sent me for an ultrasound and said there was nothing there... 6 months later with a different specialist I had surgery and he excused massive amounts of lesions)
‘the pill will cure it/stop it’ (bullshit)

Gold standard is a Diagnostic laparoscopy, it’s not a big or dangerous surgery, my first I went in in the morning and out by lunch time. Then surgical excision to treat, do not be fobbed off with laser excision, this method burns the top layer off lesions but can easily leave behind diseased tissue which continues to grow, surgical excision by a skilled surgeon is the best course of treatment.

I have unfortunately had far too much experience with endo and it has had a huge. impact on my entire adult life. Before proper treatment I suffered all of the symptoms you have mentioned and was ignored by doctors for years, 17 to be precise. It was only when due to infertility my dh and I started investigations on the nhs through a fertility clinic and eventually went private to get my diagnosis and finally accessed proper treatment. After many years of pain (and expense) my career, relationships and self esteem having suffered along the road I am finally pain free.

@ThePontiacBandit I’ve just seen your post, I’m sorry you’ve had similar experiences getting diagnosed it’s infuriating.
If you have had shooting pains down the back of your legs has adenomyosis ever been mentioned to you? Also if your pain is getting worse post op defiantly push for further treatment, like I said to OP hormonal treatments don’t address the root cause and while they may offer relief to some women it’s only ever a temporary fix and the disease is still there and still progressing, it may be an option for someone with stage 1 or 2 but if you’ve already had surgery it’s likely that you have a more advanced stage, laser isn’t the gold standard in treatment and Leaves behind endometrial tissue which continues to grow in response to the stimulation from your estrogen. You need to pursue a surgeon who will surgically excise your endo, you should get much longer lasting relief post surgery then. It’s not a cure though and may still recur but you’ve a much higher chance of getting a longer spell symptom free or indeed not require further intervention if your surgeon is good and your endo isn’t too infiltrating

@Barefootinthecarpark hi! I’m hellsbells! I haven’t used that username in ages and can’t remember how to change back, I hope I gave some advice way back that you found useful xx

Yes and you've been badly let down.

A laparoscopy is needed to diagnose it. You should have been offered one long ago. Sadly the average waiting time from first presenting to laparoscopic diagnosis is ten years. You're not alone.

Also consider an induced menopause afterwards.

@betterfantasia what frustrates me is that I vividly remember the doctor who referred me for the ultrasound about 6 years ago mentioning the idea that you needed a laparoscopy to be sure, but then when the ultrasound came back clear he said I didn't have it and moved on to the next thing. I really wish I had all of the information then that I have now so I could have pushed a bit harder. It's just so many years and years and years of wearing down your confidence and your self esteem. Part of me just wants answers, but part of me is so angry that so many women are in a position of being fobbed off, told they are fine, told it is normal. I remember the doctor saying to me years ago after more tests came back negative "great news, you are perfectly healthy" and saying to them "but I still have all of the symptoms that I came in here with?" And they just sent me on my way!!

I was put on Ponstan painkillers at 15 by the doc and my mum took me back in after 6 months and told them that the ponstan was literally having zero effect and I was missing 2 days of school every month, so they put my on the pill at 16- that was 17 years ago. I have been going to the doctor for the past 9 years maybe 2-3 times a year or more about my stomach issues and pains and currently my medical notes say that there is nothing wrong with me. It makes you feel like a crazy person. Like @Barefootinthecarpark I now have health anxiety because any time I am ill I vary between worrying that I'm imagining it and worrying that it's actually serious but no one will believe me.

Yeah I’ve had similar too. Endo is notoriously difficult to pick up on scans. Laparoscopy is the only way to confirm it.

When I had chronic pain I’m sure docs thought it was in my head. No painkillers touched it (I can’t take NSAIDs because of my asthma). It woke me up at night though so I knew it wasn’t just in my head.

@betterfantasia op is trying for another baby so induces menopause isn’t an appropriate course of action at the minute. @arsedaggers it’s somewhat controversial but you may want to research immunes treatment to help you get pregnant. There’s a school of thought that endo is an autoimmune condition and as a sufferer your body has an immune / inflammatory response to anything implanting into your endometrium. I had immune treatment with my last pregnancy which is the one and only time I’ve had a successful pregnancy after repeated Ivfs etc. Not something to jump headfirst into but definitely worth researching while your waiting for Laparoscopy / excision. You could also look into an anti inflammatory diet, go gluten free, sugar free and alcohol free which all can increase inflammation in your system.