Mo
First time poster, and recently diagnosed with endo.
I bled from the age of 9 to 12 fairly frequently. Originally once a month but very heavy with crippling cramps (but nothing that neurofen or Panadol couldn’t handle) then going onward to every second week. Doctors in the 90’s/00’s didn’t know what the issue was and put me on the pill (to my mum’s reluctance of course but even she had no idea what was going on)
Stayed on the pill (Levlen ED) till I was maybe 28/29 when I said my periods started getting much lighter (last 1 day) or even not coming at all. GP said to stop the pill so I did and things came good for a year. Regular, not flooding/overly heavy just normal. First time in my life!! Not even signs of cramping!!
Fast forward to maybe 33 years of age and then all of a sudden the periods came more frequently… then they lasted longer… first 8 days then 12 then they just never left. A whole 2 years of continual bleeding, GP visits, scans and tablets. I did refuse the pill originally as I did once think pregnancy would be a nice thing.
Gyno referred me to another specialist because I was too difficult and she specialised more in IVF… specialist eventually found tissue on my left ovary and referred me for surgery in November last year, which I went with to stop this continual bleeding. He also did a tubal flush which found my tubes were free.
I had no periods till February 2026 and when the first one came following the surgery it was somewhat light. Then it just didn’t stop again. It went for 3 weeks and then stopped for 2 days and then started spotting again. Reluctantly I went onto Slinda 4mg at the suggestion of the new gyno specialist for a 3 month course. Again though it was just bleeding and no cramps/pain.
The problem is I started spotting a few times (honestly no biggie for a day) but last Friday I had a breakthrough bleed. The Slinda didn’t really suppress it and the gyno did say if it comes to stop the pill and take the 4 sugar pills and then start again. It technically was right on the second month in line with the pill too.
Well… it was heavy and Saturday I passed the biggest clot of my life… intense cramping and then something the size of a $5 note came out of me…. Actually scared me for a bit… but cramps immediately stopped. Cramps were minimal until Monday night when I went to bed and they were persistent. When I woke Tuesday they were so bad that tablets did nothing. I used heat packs every few minutes and just found myself curled in a ball half the time.
I started Slinda again that night and the cramping began to subside. They are still present to my left side and heavily in my pelvic area/groin. Neurofen takes a slight edge off but not by much.
I ended up going to an urgent care clinic where they just profusely apologised to me stating they couldn’t do much but take more days off work (which I can’t afford!!)
Is this literally normal for endo?? Is this my endo growing again or is this the result of me stopping Slinda for 4 days? 😬😬
I’m worried that I perhaps should have just continued with Slinda and not stopped it, but I’m also worried that if/when I do stop it am I going to be in this much agony again!?😭