Hello all, I'm quite late to the party but after my most recent laparoscopy yesterday, I feel very deflated and invalidated. I'm sorry for the long post but here is my story so far...
From age 15 (I'm 32 now) I had terrible period pain, to the point I was bedridden some days and missing school, which only got worse as I was older and began working full time. I went on the pill at 15, to try to help control the bleeding, but after various different contraceptive pills, I was referred to gynaecology and had the Mirena coil fitted at age 18 and also sent to a psychologist because I was told the pain was in my head.
Fast forward 3 years and multiple doctors appointments later, a complaint to the gynaecology department for constantly fobbing me off with pain relief or hormonal injections, the coil taken out as it was no longer agreeing with me, I finally got the laparoscopy that confirmed I had endometriosis. Now, I didn't have a lot of it, they cauterised what was there but they did leave a small amount that was around my bladder as they didn't want to cause more damage (they are not endo specialists at this hospital). I then started Zoladex injections and was on them for 6 months on, 6 months off for 2 years.
After another 4 years of varying medication, pain relief such as cocodomol, tramadol, physio, acupuncture, herbal remedies etc, I underwent another laparoscopy and they found and cauterised more endo. Happy days, I felt OK for a little while, and then in 2018 I fell pregnant with my daughter (whilst on the Decapeptyl injections 🙈). For around 8 months after having her I had no endo symptoms (I had the implant put in), then in early 2020 it came back with a vengeance, so we restarted the Decapeptyl injections which helped the bleeding but did barely anything to stop the pain. After 18 months I stopped them after a discussion with my doctor to let my body have a break to see if things settled and if my periods returned, which they did not, but for a year I just grinned and bared it and coped on over the counter medication.
At this point I'm juggling a full time job, a toddler, studying to be a veterinary nurse and got married - I had no time to be unwell, so grinning and baring it was the only option to me.
January 2024, I began to feel very bloated and had little appetite. I was peeing more frequently, no energy, and all my pelvic pain was worse than normal, spread down my legs and back. I just thought it was another flare up, so went to my usual trusty heat pads, pain relief, asked for stronger pain meds from the doctors etc. I hadn't bled for 7 months at this point, apart from random spotting. However after 3 weeks the bloating was worse, and I had been in pain every day - it wasn't fluctuating like it normally did, and it felt totally different to normal endo pain. My back pain was also becoming a real problem and between that and the pelvic pain it was really difficult to do my job well, or lift my daughter or walk my dogs. I made a GP appointment and had the Ca125 blood test, which was normal, and we began a food trial too to see if it helped the bloating (spoiler - it didn't).
After a bit of to and froing I got referred to physio for my back, and an ultrasound for my pelvis. I had a bit of pelvic congestion, and a cyst on the ovary, so nothing too much to be concerned about and was booked to be rescanned in 3 months. In the meantime my uterus was beginning to feel like it was going to fall out, I went from walking 4 miles easily with my dogs to barely making it round the small village we live in. I was in agony, so was given tramadol to tide me over til my next scan, and physio decided that my back pain was linked to the pelvic pain so signed me off without doing any imaging.
I finally had my appointment with the gynaecologist and after a lot of pushing on my part, I was allowed to proceed with a laparoscopy (7 years after my last one).
Next scan in June showed another larger cyst, which was a suspected endometrioma, and I was certain that when they did the surgery the cyst would come out, I would have endo cauterised, and to be honest I kind of expected my pelvis to be in a bit of a mess because of the way the ultrasonographer had made it out to be. I was confident after this op I would feel better. Not meant to be, unfortunately.
I got a cancellation appointment for yesterday, and the day I got the appointment (8th July) I began to bleed. I didn't think much of it, but it turned into what I thought was an actual period. I was in A LOT of pain, struggled to work but powered on, thinking oh my period is just returning, but it's OK I have surgery on Monday so this is good timing. Well, I had my damn surgery and they found nothing. Nada. My cyst had gone, suspected rupture apparently which is why I probably felt worse and was bleeding in his opinion. No endo to cauterise this time. No other reason for this daily, debilitating pain for the last 7 months and also no real options going forward apart from restarting the Decapeptyl injections along with HRT and just pain management again with possible referral to physiotherapy for pelvic exercises. He doesn't know what's causing my pain, and once again I was made to feel like it was all in my head, just like when I was medically gaslit 15 years ago.
I'm sorry for the rant, but I don't know who to talk to, I don't know what to do next and I feel so down about it all. Any help would be much appreciated.
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