Constant bleeding- bright red and clots... is this normal?!

[Zo95]

Hi All,

I was diagnosed with endo in November via MRI scan (2cm lesion detected on ovary) and PCO but not PCOS (I have the cysts but not the syndrome) earlier in May via trans vaginal ultrasound.

My symptoms are severe pain in my abdomen/pelvis, awful cramping in my lower back, severely swollen boobs, awful acne (especially cystic acne) and most recently sciatic pain in my lower back, down my legs and into my feet. I suffer particularly badly of an evening- but day to day I often have a degree of abdominal pain and very fatigued.

The most concerning thing for me at the moment is the sheer frequency at which I bleed (in December I only had a couple of days not bleeding!) and quite how bright red the blood is. I also have a lot of clotting, and it’s very heavy. I just want to know- is this normal?!

I am awaiting a laparoscopy, colposcopy and insertion of the Mirena coil- but with COVID I have no doubt I’ll be waiting some time!

I’m currently on desogesteral and have been for several years (combined pill caused awful migraine and high blood pressure) but for the last 3 years the bleeding has occurred on desogesteral and has become so frequent in the last 12 months, and particularly bad after my MRI (they injected a large amount of gel inside my vagina- and it seems to have unsettled everything! Anyone else had this?!).

I am 25, and feeling at a complete loss. The pain exhausts me, and whilst I am blessed with an incredible boyfriend and wonderful family (who are nothing but supportive!) none of them can relate.

I am so worried that I may never have children- but in the here and now, I am genuinely just exhausted by endo and feeling very alone and isolated with it all. I’m constantly bloated, constipated, nauseous, tired- everything I shouldn’t be!

I’d be really interested to hear people’s experiences and for anyone to reach out. We are all in this together after all!

Xx

[Moon_maiden]

Hi, how are you today? It’s very hard to deal with at times. What did GP or gynae say about the constant bleeding? If you haven’t talked to anyone, it would be a good place to start.

Not sure what pain relief your on, I’ve tried various, most recently on Amitriptyline for nerve pain, either Tramadol or Oramorph. If you don’t want opiates Nefopam is an alternative.

You can ask for a referral to the pain clinic

When I had a bladder ultrasound that was so painful as had to have a full bladder initially. That really set it off big time. After exam with endo consultant took a few days to recover from poking and pushing abdomen. Lots of adhesions when had op.

[Zo95 in reply to Moon_maiden]

Hi!Thanks so much for your reply! Gynae consultant just said it’s likely to be the endo... it’s just a lot of comments I’ve read, people say their colouring is very dark, and mine is so red!

I have been prescribed amitryptaline- prior to that it was mefenamic acid.

I am guessing they’ll find more adhesions when they operate- just a lot of waiting at the minute!

Thank you so much for your reply xx