Indication of endometriosis - help

[Rocksintheriver]

Hi,

I’ve had intermittent pelvic pain on the left said for around a year, and my periods have also become irregular in this time frame too. The GP sent me for a pelvic/transvaginal ultrasound and the result has come back as indicating ovarian endometriosis with multiple cysts. I have an appointment booked in to discuss this further and potentially be referred to gynaecology.

The thing is, I very rarely get period pain - never have! Mild cramps in my back but that’s it. I thought this was the main symptom of endo? So I’m questioning how I could have it.

I have been getting increasingly severe pelvic pain on my left side (near my ovary) which stops me from walking sometimes. But this is always from cycle day 7-16. So the time where my body is gearing up to ovulate/on ovulation. Is this a symptom?

I’ve also been experiencing very painful bowel movements occasionally. It’s like a searing pain where I can somehow feel the stool moving through the end of my bowel and into my rectum. It’s honestly crippling and much worse than labour pains! My periods have also begun to start with a day of dark, brown blood, before picking up to being the more usually red/pink colour. Are these symptoms linked to endo?

Sorry for the rambling, I’m just so confused by this being found! Particularly since this has all started happening only after the birth of my two children (youngest now 3). Prior to kids my periods were like clockwork with no pain at any point in the cycle.

I also forgot to mention that around ovulation the pain also radiates down my left leg to my knee, and my left feels weak and numb occasionally.

@Rocksintheriver
Endometriosis is where endometrium like tissue (but not endometrium tissue), grows outside the womb, most commonly in the pelvis, bowels or bladder or the top of the vagina. Ocassionally it can be elsewhere in the body.
The main symptom 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. So this is a massive sign that you do have endo.

Some of your symptoms do indicate endo especially the cysts and painful bowel movements but 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. So to distinguish what it could be, you'll likely have another ultrasound perhaps transvaginal and then also an MRI. But 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 is (can be opioids, NSAIDs) and contraception and hormonal treatments (gonadotrophin releasing hormones).

Main endo symptoms:

• Irregular or heavy periods
• Pelvic pain
• Pelvic pain on opening bowels (dyschesia)
• Pelvic pain on passing urine (dysuria)
• Referred pain to the tops of the legs or back
• Fatigue

The links below have much more detailed and useful information as does the Endometriosis Uk website. Hope this helps.
https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/
https://endometriosis.cymru/diagnosis-treatment-and-care/diagnosis-pathway/
https://www.nhs.uk/conditions/adenomyosis/

I’ve had those symptoms re pelvic pain and leg pain. In my case the cause was endometriosis.

Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if endometriosis is present. A keyhole surgery op called a laparoscopy is the usual way it is diagnosed. I’ve had more internal ultrasounds than I care to mention and none of those detected the endo present in my uterine cavity mainly because the deposits are so very small.

i would think you will be referred to gynaecology and hopefully you will not be in for a long wait. In the meantime keep a daily pain and symptom diary if you do not already do this.

Endometriosis UK is a useful website.