Endometriosis ?

[Jade313]

Im not sure if what im dealing with is possible endometriosis but what were your symptoms?
sometimes but not all the time after sex i suddenly get this intence abdominal pain that feels like blades and its so bad im doubled over in pain can barely move and it makes me feel sick. Normally it fades after about half hour! At the moment i dont get periods as i have the mirena coil but i get gassy i get some bloating . Apparently i have IBS after having small bowel MRI to rule out chrome's etc Iv also had internal scans and abdominal scans but fine. Recent smear back in February was also fine
just looking for other people’s experiences ☺️

That sounds awful. I’m sorry you’re suffering with that. I imagine everyone one’s experiences are different, but for me, with endometriosis I suffered very bad pain around my period - largely towards the back of my lower body - along with diarrhoea and occasionally vomiting and passing out. It is only now that I have developed adenomyosis that I suffer pains at the front, which sounds similar to the pain you’re describing. Personally, however, the pain has always been connected to my menstrual cycle rather than intercourse. I would definitely advise going to the doctor - you shouldn’t have to put up with that!

@Pineapplesunshine Thank you for replying ☺️ looking on google apparently pain during or after sex is one of the signs of possible endometriosis! Iv had numerous tests done even STD you name it and all been fine. Cervix womb etc all good after transginal ultrasound and internal scan but my last doctor did mention endometriosis so I think I will definitely make another appointment to get referred!
it doesn’t happen all the time thankfully but when it does happen it’s awful 😞
sorry you also had to go through all that, it’s horrible and the problem is a lot of time we are not taken seriously!

I agree with pp that this doesn't match my experience of endometriosis - but I would still say push for gynaecology and a laparoscopy. There's a few similar conditions that only show there. Make sure you don't minimise your pain in any way. First time I went to GP, I was told that they would make a referral, but gynae would be too busy to pick it up as I wasn't in enough pain. I only got on a pathway after my pain escalated to emergency investigation level and then it took a couple of years. Fun times...

@Brightasarainbow sorry for late reply back !
yeah I just can’t work out what else would be going on , I’ve had recent smear test that was fine. I’ve had a small bowel MRI , transvaginal scan (internal exams) which I know will not pickup endo!
abdominal ultrasound was fine , full blood count etc so I’m just generally confused but I know endo affects people differently with some people not having any symptoms at all and so far that’s the only thing I’ve not been tested for but my doctor did happen to mention it on my last appointment if my pain didn’t go away . So I will be making another appointment next week hopefully x

@Jade313 If your pain is severe it might be an
underlying condition. It could be fibroids or ovarian cysts. I recommend going to your GPask for a pelvic ultrasound, a transabdominalultrasound and anothet transvaginal one to see what they find.

Are you symptoms just on your period? Or do you have some during the month? (Because if its just on your period, unlikely to be endometriosis). Your symptoms don't seem to be endo - painful sex could be vaginismus or UTI. And if you have symptoms not on your period - what are they? Is the pain worse on or off period?
If you had a transvaginal and/or pelvic ultrasound normally it can pick up adenomyosis.

I recommend asking the GP to try the pill and/ or mirena coil can be amazing with heavy bleeding and pain. You might try different pills first. Yes, they treat the real cause as well (mirena will may the uterus lining thinner, less bleeding and less cramps), but with the pill, will treat symptoms.

You may have 1. Primary dysmenorrhea (heavy bleeding and painful periods with no condition or cause or 2. Secondary dysmenorrhea so a condition e.g endometriosis or adenomyosis causing it.

You will need to try NSAIDs and mirena/pill and Tranexamic acid first before any further scans like ultrasound and MRI. Often if the pain is significantly reduced with said treatments its more likely (not 100%) to be primary dysmenorrhea. Also very dependant on whether you only have symptoms on your period or across the month as to whether you have primary or secondary.
Then if ultrasounds pick up on anything you may need to have an MRI to see endometriosis. However, the only way for definite diagnosis is a laparoscopy and then they will often excise the endometriosis tissue if they find it etc. But endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning intact and then post-surgery adhesions often form.

The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period. Often endometriosis on the ovaries can form cysts containing old blood called endometriomas (also known as chocolate cysts) which can be very painful. Another popular cyst is haemorrhagic ovarian cysts with endometriosis.

But you could also be adenomyosis where the lining of the womb grows into the muscle of it, but unlike endo is localised to the uterus only. Thus, symptoms are mainly a couple days before a period and during your period. Main endo symptoms:
• Irregular or heavy periods
• Pelvic pain
• Pelvic pain on opening bowels (dyschesia) and wider gastrointestinal symptoms (diarrhoea amd constipation)
• Pelvic pain on passing urine (dysuria) and bladder symptoms sometimes
• Referred pain to the tops of the legs or back
• Fatigue
Crucially you can still have endo even if they don't see it on the scan, the only clear way for diagnosis is a diagnostic laparoscopy and then mangagement can look like pain medication depending on how severe your pain and symptoms are (can be opioids, NSAIDs) and contraception and hormonal treatments (gonadotrophin releasing hormones).
The links below have much more detailed and useful information.
https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/

https://www.nhs.uk/conditions/adenomyosis/

Not my experience either, but the Mirena coil is often used as a "fix" for endo, so if you have one fitted that might suggest not?

@TheLivelyViper thanks for responding .
I don’t get periods as I have the mirena coil at the moment . The pain is after sex but only happens once in a blue moon so it’s not every time. I’ve had every test going including UTI and STD , transvaginal scans , internal exams and abdominal scans , blood tests and a recent smear back in feb . Just baffling to be honest !

Endometriosis cannot be ruled out here as a possible cause for such pain post sex. (Deep pain during sex is one of the indicators of endometriosis).It can also get onto the intestines.

Mirena is not a treatment for endometriosis but is offered also because it is cheap.

It could be something like vaginismus which is about the vaginal tissue and the pain with insertion. I'd look into this first before considering endometriosis because the symptoms seem like something else with it being on and off is a I'd say and there are most definitely other symptoms without having a period. It could be adenomyosis but that can pretty easily be seen on transvaginal ultrasound or definitely an MRI. I'd go to a sexual health clinic often you can see a sexual health consultant there pretty quickly and see if they can investigate it further.

The mirena coil I'd a treatment for both adenomyosis and depending on the endo symptoms you have it can be used for that as well. Endometriosis is incurable but treatable. The mirena coil gives synthetic progesterone which thins the uterus lining and thus makes bleeding less and and get rid of periods so does treat it. It's not just gives out because it's cheap. Since the mirena has gotten rid of your periods and you're not getting pain I'd say you likely just have primary dysmenorrhea (heaving bleeding and or pain with no underlying condition) so you can just continue with the mirena as your main form of treatment. Also as I mentioned above the main symptom of endometriosis isn't period pain because it's a whole body inflammatory so pain and symptoms continue across the month. So you'd likely have other symptoms alongside painful sex if you have endo as its a strange one to have on its own and it sounds like vaginismus to me, especially because it's not consistent. Try and find your local sexual health clinic and ask for an appointment with a doctor they often are more helpful with issues like that and are more informed than the average GP because their specialists. So I'd do that and some research on vaginismus so that you can bring it up at the appointment and see what they think. Also it could be two seperate issues so IBS and vaginismus because it sounds like IBS for the other issues (I'd ask for a referral to gastroenterology from your GP as they'll be much more helpful with long-term management).

How are you doing @Jade313? Have you seen your GP since?