Does this sound like endometriosis?

[UniqueGoldNewt]

Hi,
so I am looking for some advice/opinions. Just a disclaimer im not asking for diagnosis as I know it’s impossible online- just wondering what other people think & their personal experiences. X
so some backstory- i was diagnosed with PCOS as a teenager at around 16. It’s caused me years of issues and is severe to the point where I’m now a type 2 diabetic sadly & I have severe symptoms and have to shave my face every single day. I am also highly infertile.
however, recent flare ups got so bad and I saw a gynaecologist and endocrinology. Gynaecologist and endocrinologist strongly suspect endometriosis. Endocrinology said my hormone levels are abnormal and have discharged me saying weight loss will help (yes of course it will but I’m overweight and insulin resistant because of my PCOS and I thought they’d do more about the hormone levels and symptoms and I feel this isn’t being addressed except from weight loss ONLY). Gynae are following up in 6 months but they just gave me birth control pills and advised me to get pregnant to stop the suspected endometriosis pain. 🤦‍♀️
anyways, the real thing is I’ve been getting such severe pelvic pain. I’ve had it on and off for years but recently it’s got so bad to the point where I can’t think of much else and it’s strongly there along with my lower back feeling it’s in a vice. It’s a throbbing pain deep in my pelvis around my reproductive area & it’s on both sides. Sometimes it’s sharp stabbing but it’s mainly a deep throbbing ache. It actually got worse after I had sex tonight :( Ive been given strong painkiller of mefanamic acid as ibuprofen hasn’t helped.
does this sound like endometriosis pain? Ive been told my PCOS isnt causing the pain and it’s more likely to be that but then im seeing and told that cysts can cause pain? However ive been scanned lots in the past and always always have been told my ovaries are showing lots of small cysts.
just seeing if anyone has had similar/ any advice
im calling my gp tomorrow x

Also sorry I forgot to mention another thing- TMI but when I have my period i bleed from my bottom. That’s why gynae and endocrinology also suspected endo xxx

Get a referral to gastrology (after consultation with your GP) and investigations whether that be colonoscopy etc for the blood in the bowl - that seems to be the issue rather than a gyne thing. It could be bowels etc and I'd want that investigated first.

Can you be more specific about your symptoms and what the investigations you had, have found so far If your pain is severe it might be an underlying condition like fibroids or ovarian cysts.

I recommend going to your GP ask for a pelvic ultrasound, a transabdominal ultrasound and a transvaginal one to see
what they find.

Are you symptoms just on your period or elsewhere during the month? (Because if its just on your period, unlikely to be endometriosis). What symptoms do to have during your period? 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). The pill also does the same with hormones (they ask you to try it first because it is an adequate initial first line treatment - many pills are made specially for this first and not contraception anymkre).

Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot) and tranexamic acid (helps reduce heavy bleeding) - you need to start taking it days before your period starts so that it can work at best capacity. The same with ibuprofen and/or paracetamol. Start taking it 3/4 days before and it will be much better.

You seem to have 1. Primary dysmenorrhea (heavy bleeding and painful periods and pelvic pain with no condition or cause over - 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 (including the pill, NSAIDs at low-medium dose and tranexamic acid, it's more likely (not 100%) to be primary dysmenorrhea - doesn't mean you aren't in pain or that it can't be treated. 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 (pelvic ultrasound or transvaginal) you may need to have an MRI to see endometriosis. 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/

Also cysts are normal sometimes - every one releases a cyst during ovulation, that should be happening. However as you have PCOS, you likely have lots of small follicles which can cause pain (if there's loads of them or if they grow too much). So maybe look into a hysterocopy to see what's going on - bring that up to gyne. Hormonal imbalance doesn't really indicate endo, so I'm guessing that's more to do with your PCOS.

Also if the mefenamic acid isn't helping (make sure you're taking it properly, as in before it starts by a few days) - give it time, perhaps increase the dose or try another NSAID as it didn't work for me but other NSAIDs help (naproxen and there are others). You can try opiods (they are reluctant to prescribe these often without evidence of severe pain, or very close to diagnosis but you can ask - they may give you a small dose for a few days). I'm on long term opiods and they help but I have lots of intertwined complex issues and I wouldn't say it's a fun high. The bleeding from bottom isn't normally an endo symptoms or wouldn't be the first jump to - normally you look at haemorrhoids, polyps or cysts in the bowels and have a colonoscopy or endoscopy or sigmoidoscopy (or a combo of them first) - I'd ask for this first to rule out Ulteractice Cysts, IBD etc.

On the sex - look into vaginismus - it sounds like what you are having. Pelvic floor therapy can help alongside low dose topical oestrogen (for vaginal dryness). I'd also go to your local sexual health clinic, there's often consultants in sexual health and ask them what they recommend.

Do you have any bladder symptoms? Are your symptoms throughout the month or just on your period?

The thing is that area is very broad even just the lower pelvis - there's tons of things it could be whilst it seems slightly linked to your pelvis it also may be a bowel issue (or two seperate issues so I'd empahsis getting them both investigated as such as you wouldn't want to miss a serious bowel issue - and blood in poo suggests more that than endo (doesn't mean completely of cource). For the GP appointment, I'd either increase the mefenamic acid dose, change NSAIDs, add tranexamic acid. Also get tests for the bowel stuff - sigmoidoscopy, colonoscopy is what I'd mainly want. I'd get on the pill or even better the mirena coil as soon as possible (you normally need to be on it for 6-9 months before a gyne referral unless really serious). This is because it takes time to settle and they want to see if it works, if you go to gyne without trying the pill or mirena, they'll send up back to GP so you can, and unlikely to do anything else unless there are massive signs. Perhaps also some low dose topical oestrogen and low dose opiods. You could also ask about further scans - transabdominal, transvaginal, transrectum and pelvic ultrasound and depending on what they find an MRI with contrast or CT. From there think hystercopy. Also get the details to self refer to pelvic floor therapy or for the GP to do so and look into vaginismus. Hope this is useful and you get some answers @UniqueGoldNewt. If you get the mirena coil they can offer pain relief btw - ibuprofen and paracetamol 1 hour before and numbing spray, Licodaine injection etc.

Pelvic pain is one possible indicator of endometriosis. It can also co exist quite happily with PCOS. I am hoping that the gp will refer you to a gynaecologist because this is well outside their remit.

The cysts to do with PCOS are actually cystic follicles. Some of these are dormant whilst others contain hormones. A polycystic ovary is larger than a non polycystic ovary which is about the size of a walnut.

i would keep a daily pain and symptom diary if you do not already do this as this will give the gynae clues. You will need to be persistent in order to get answers.

Verity-PCOS is a good website for those with PCOS.