Possible Endometriosis?

[Roseypie]

Hi everyone, im hoping for some advice if anyone can shed some light? I hope this is the right place to post this.
I have been suffering with on and off bad legs since July last year, my mum had fibromyalgia and other things and I initially thought I may be the same. I got taken to hospital with severe abdominal pain and was told it could be endometriosis. I have the implant fitted and was fine no periods the odd leg pain on and off but nothing like I have right now with my 1at period since being fitted. The doctors just keep throwing tablets at me but I have finally been referred to see a gynaecologist! And some pills to slow down the bleeding.
I have severe leg pain in my calves and feet bad twitches and can barely walk! I haven’t slept in two days. The cramps give me anxiety so bad.
has anyone else experienced this? And did you find anything that helped? 🙏🏻💕

• Can you be more specific about your symptoms and what the investigations (e.g scans) you had, have found so far? If your pain is severe, it might be an underlying condition like fibroids or ovarian cysts or also endometriosis.

• Are you symptoms just on your period or elsewhere during the month? Is the pain worse on or off period?
• What symptoms do you you have off your period/in general?

I recommend going to your GP ask for a pelvic ultrasound, and a transvaginal one to see what they find. If you had a transvaginal and/or pelvic ultrasound normally it can pick up adenomyosis.

Its worth looking into the mirena coil can be amazing with heavy bleeding and pain. The mirena works by making the uterus lining thinner, less bleeding and less cramps and pain.

Ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot as they are anti-inflammatories and give pain relief). You can also try 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.

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. It's possible there is no cause which is a larger majority of people with Primarh dysmenorrhea but it's still worth trying meds to help with symptoms, a variety of things help and if something helps with symtpoms and your life then definitely stick with it.

Then if ultrasounds pick up on anything (pelvic ultrasound or transvaginal) you may need to have an MRI to see endometriosis.
However, the only way for definite diagnosis is a laparoscopy and then they will excise the endometriosis tissue if they find it (this is a main treatment, but as endometriosis is a chronic illness it very often does grow back, so it's not a one time sort of surgery for many people but it depends on your symptoms, where it is etc).

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.

The stages of endometriosis are actually about how it impact your fertility - so a higher stage more impact on fertility but not pain. So a person with stage 1 endo could be disabled by it and have severe complications but a person with stage 4 may not.
But you could have be adenomyosis where the lining of the womb (endometrium) grows into the muscle of it (myometrium), but unlike endo is localised to the uterus only. Some people do have both but they can only have one, they are different but both very painful.
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

Mangagement can look like pain medication depending on how severe your pain and symptoms are: (can be opioids, NSAIDs) and contraception and hormonal treatments (contraception, 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/

@Roseypie The nerve pain and leg issues you talk about should be addressed seperately, I'd talk to your GP about them as one appointment as 10 minutes is not enough time. But if it is getting progressively worse that is a bad sign and likely needs neurology to intervene not gyne. Endometriosis tissue can be on the nerves and cause issues, but it's typically more pain and it is less common as well.

Plus loosing sensation is a red flag and even if it was due to endo (you should still be open to other diagnoses to male sure you do not do digansotic overshadowing, and not find something else which is the cause).

Even if it was endo, neurology and your GP first should still 1. Check for direct neurological causes which are more likely and would still be in charge of management even if it was due to endo. Plus waiting lists are long etc and it will take some time to exclude or include endo as the cause, but if you don't deal with this seperately then your nerve issues could get to a point where you don't fully recover. So I would make a GP request/online form on the leg, nerve issues, and walking issues seperately and get an appointment from there because there is likely another cause and it should be investigated on its own.

Hi OP, we've moved your thread to our Women's Health topic.