I've been posting here for almost 2 years about my pelvic pain and heavy bleeding while on waiting lists.
I had a laparoscopy last month which showed severe and widespread adhesions. I was told by one gynaecologist that there was no endo and the adhesions would have been caused by my c-section in 2009. Then another gynaecologist said that there may be endo beneath the adhesions, and that he doesn't believe a c-section could have caused as many adhesions as I have.
While I wait for more surgery I decided to pay for a private ultrasound at a gynaecology centre in London that was recommended to me.
I'm on the train home now after the scan and feeling rather deflated. The gynaecologist was very thorough but she found no signs of endo or adeno, and one tiny fibroid that she said is "insignificant".
Now, some time ago I posted a photo on here of a huge blood cot the size of my fist that fell out of me on my period. Someone mentioned it looked like possible fibroid detachment? I've tried googling this but can't find much about it.
So my question is, just because she found one tiny "insignificant" fibroid, surely that doesn't mean I've not had larger ones in the past or that this one can't grow?
I feel so lost now. She said she couldn't find any obvious reason for my pain or heavy bleeding.
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TallulaShark
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Hi i went back in 2017 with flooding had an internal scan and was told nothing wrong went two years ago again as bleeding was worse and i was told i have adenomyosis, endometriosis, two fibroids, and an ovarian cyst, the cyst has gone now thank God. It annoys me that they say there's no reason, because obviously there is and they need to keep investigating until they do find out the flipping cause. Sending you a big hug too x
Thank you. I feel so lost, not sure what else to do. I've had a lap, two internal ultrasounds (one privately so I can't afford to do anything else privately), I've asked for an MRI twice and been refused. I have a hysteroscopy booked for July but I don't know how much use that will be.
Hi i had one of those too, my advice is to tell them you want a local anesthetic as soon as you get to the hospital, as they can be painful for some people, don't be fobbed off. We are all to often fobbed off. But on the plus side it is a good thing for checking things out x
Hello! It's so frustrating that they have not given you any answers to your pain, I hope my experience can help you.
I had fibroids removed in may last year, only small but anemia made the heavy bleeding needed obvious treatment. By August I was bleeding so heavily that I was going through clothes daily, November I was admitted through a&e and scanned the fibroid (small less than 5cm) had grown back but as you said massive clots ment they had to deal with it and the consultant said it was "an aggressive" fibroid and the uturus recognised it as foreign body and was attempting to get rid of it.
I have been put on zoladex, with norethisterone and transemic acid while I wait for a hysterectomy.
I have a hysteroscopy scheduled for July but I've lost hope that anything will come of that. I've had periods so heavy that I've almost gone to A&E. I particularly remember my period over Christmas 2022 where in the space of 24 hours I went through several pairs of underwear and trousers and dozens of night time pads, and was passing clots the size of my fist (the photo I posted as mentioned), I felt awful and dizzy. I should have gone to A&E.
It's scary isn't it. Sending gentle hugs the appointment in July shows something as suggested take pain relief before but also make sure they use local anaesthetic!
You are very similar to me. I have stage 4 endo adhesions but they're not presently active. I have 5 small(ish) fibroids and a cyst. I bleed and bleed and lose clots as big as my hand. I take photos too in case nobody believes me. Are you on HRT?
I think it's so tough when you're younger with this although they just wave their arms in the air and sat peri menopause when you're older. I'm reading about estrogen dominance a lot. Have a look at it. You may need to balance your hormones to make it stop x
I'm on zoladex too and it's a life saver. It hasn't completely stopped the bleeding and I'm trying to lower my estrogen HRT but it's made life bearable again. My injections run out after 10 weeks and the bleeding comes roaring back! I had to take a week off work as you can't leave the house. My consultant says he doesn't know why I'm bleeding. This is the problem - they don't want to get to the cause as it would take too long. They just mask the problem with zoladex and wait for menopause. This has been the toughest 2 years x
Hiya, so I have had lots of ultrasounds and never once has a fibroid been picked up - I recently had an MRI where they can see lots of small fibroids. I also have Endo. I’m actually going to have a laparoscopy and the surgeon is going to remove them if they’re not too embedded as he said they could be causing my pain. He mentioned they are linked to high levels of estrogen, I’ve also had 3 failed round of ivf. Sorry you’re not getting many answers, it’s so tough xx
They are linked to estrogen. I wish doctors would introduce some kind of reliable test to see who is estrogen sensitive and likely to create fibroids. Xxx
So sorry to hear you're having a terrible time of it. Periods suck. I had fibroids as well as endo and adenomyosis. All of it was horrendous. I can't say one is better than another or that having all of them was worse than only having one. It's impossible to know because I only know my experience which I won't go into here.
The person with the answers to this is your private doctor. Are you able to contact the hospital and explain since leaving the appointment you have follow up questions. They may have online links they can send you or simply get the gynae to respond to you directly.
Your description of that clot does sound like fibroids.
Ultimately what are they doing to help you live with the pain? Are you on the pill? Oestrogen causes endo so you may want to find an alternative contraception with no hormones involved. You may also want to investigate into hormone balancing.
I hope you find the answers you require. I find the worst aspect is not understanding what is happening.
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Confused and desperately need some advice please :(
Advice re the pill and endometriosis and fibroids 
Needing some support
Need some reassurance 
Endo WITHIN fibroid hormone treatment menopause with hrt offered 
