I noticed that my periods became very different, the week leading up to it was painful and my period was excruciating and heavy, completely different to before, I couldn’t travel to work. My endometriosis was easier to identify than my daughters as I’d had normal periods prior to symptoms.
Our daughters periods had been a problem from day one at the age of 10. At the age of 14 we eventually took her privately to see a gynaecologist as she was fobbed off by Drs. Unfortunately she was told she’d grow out of her painful periods and they should be settling by the age of 21 🤦♀️ School was a nightmare, she was bedridden for 4 days every month with severe heavy painful periods, the pain is like the twisting of a knife inside, it’s vomit inducing it can be so painful.
At the age of 21 our daughter was in a mess, had lost so much weight and dreaded her periods. I’d had enough of the fuck wits telling her she’d grow out of it. We paid privately for a consultation, the gynaecologist we saw also did NHS contracts at the hospital and said a laparoscopy was needed. Not only was she covered in it she also had a condition called unicornuate uterus, basically half a womb. The other half was what they called a rudimentary horn which was constantly bleeding into her pelvis. This condition is what led to the hysterectomy, even after the horn was removed endometriosis kept returning and she was constantly having periods, she was drained.
We found the original surgeon good until we saw on her medical notes that he referred to a post operation infection as an STD, we were gob smacked, how could he do that?! He also had a little paddy when we told him about the infection , non judgmental, it happens, he slammed his desk and said “ you can’t possibly have caught an infection on my operating table “ what an obnoxious prick, we were shocked, our G.P told us to ignore it, how can you. We also wanted to change surgeons but didn’t know how to, it’s very closed rank in the NHS. We did see other gynaecologists who said ours was at the top of his game, it transpired they worked and were trained by the twat.
I looked on the BSGE site to see who else was specialised enough to take on our daughters complex case, hence Mr Lotfallah. He was a breath of fresh air, lovely lovely man. He was at a different hospital and only knew our surgeon on a professional level, he wasn’t trained by him.
I feel your anger, we’re treated as if we don’t know our own bodies, mostly by men. It stinks and needs to change. Have a look on Endometriosis.Org, they have some amazing information. Look on the BSGE site for a surgeon close to you. If you can pay for the initial consultation do it, if you can afford the laparoscopy that’s great, the waiting lists on the NHS are ridiculous since Covid, and gynaecology isn’t funded as well as the rest of the services. We were wiling to pay 9k for our daughters hysterectomy, fortunately Mr Lotfallah wouldn’t let us and booked her in at his NHS base in Rotherham. Something else to point out that was shocking is that most private hospitals don’t have the facilities if an operation goes wrong (ICU) they have to be transferred to an NHS hospital. An eye opener, operations do go wrong for various reasons, I know this well, even with the most routine of procedures.
Unfortunately we are dismissed, I believe if it happened to men things would be completely different. My experience was back in 1994, and I paid privately for a gynaecologists appointment, in 2024 nothing has changed, it’s disgusting.
I honestly can’t believe we still have to put up with the crappy service we are dealing with. My heart aches for you, it truly does, I get so, so fucking angry for all women that are suffering. If you’re unable to go down the private road stand your ground at your G.Ps, you have a right to be seen by a specialist under choose and book. If your husband is willing to back you take him to the appointment, so at least they know you’re not some hysterical woman that god forbid doesn’t know her own body.
All the best, take care and don’t give in. It’s a fight that you have to win, ☺️x