My story is quite long, so I will try to keep it brief.For 2 years I have had chronic pelvic pain after doing various tests that all came back clear I was offered a diagnostic laparoscopy.
After 19 months of waiting I had the surgery 6 weeks ago. I woke up and after being told there was nothing wrong previously was shocked to be shown pictures and told I had stage 3 endometriosis. They told me they had removed the tissue and that I would be referred back to my GP. There hasn't even been a post op check up! 6 weeks later from the surgery and my pain doesn't feel any better. I know they removed bits (not sure how much or where), and there were adhesions. Does this mean the surgery hasn't worked and the pain isn't going to get better or do i need to give it more time?
I feel so lost as wasn't expecting the diagnosis and now trying to get my head round being in pain for the rest of my life for something there is no cure for. Any advice would be greatly appreciated, thank you!
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Cheesycat
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I'm in the same boat as you. But it's stage 1 for me .. still go very bad pelvic pain . After the laparoscopy my pelvic pain goes down and now my joints started getting sore. Sometimes I feel like I can't walk. It's been 5 weeks and I can't survive without painkillers. Still sometimes I get pain. My biopsy came as one overiangot fibrosis and one suggestive endometriosis. I have no idea what is this and what is next. Waiting for follow up appointment from gynecologist
Sorry to hear you're suffering. Do you get a follow up from the surgery? My hospital don't do follow ups. So disgusting how people mainly women are treated especially with this condition! Sending you lots of get well wishes x
So sorry to hear the hospital haven’t been supportive. Do you know if it was an endometriosis specialist or whether they excised or ablated? Excision is the gold standard, ablation is like just cutting the top off and leaving the root.
I’ve had 2 laparoscopies, the first was with general gynaecology who were just awful, they found endometriosis however wrote “no diagnosis” on my report, although they wrote endometriosis found on the surgery notes, they also ablated the area and then I was discharged back to GP, with no post-op and no clear diagnosis.
For 2 years after that I had to fight for my gp to properly look into my results etc, which he believes did show endometriosis from the histology so he then referred me back to gynae, who referred me for an MRI- that showed stage 3 Endo and adenomyosis, so I was referred to an endo specialist.
My second surgery was much better, the endo was excised (rather than ablated, which is the better procedure for it) and I received my results, with locations, how extensive etc. Plus, I’m now under the endo specialist consultant for the next year. I still do have pain and it takes a while to come to terms with having a chronic illness, however I feel like I’ve been heard now and I can take that back to the GP and specialists if needed, rather than fighting for the result, I’ll just be fighting for the treatment.
During the time I was fighting for my results etc, I requested my medical files and had the physical copies of my surgery notes, reports, discharge etc all posted to me. That’s where i noticed the discrepancies and took them to my GP.
I’m so sorry you’re going through this, it’s bad enough we have to fight for the investigations, let alone fighting for the answers too. My advice is to keep pestering, keep pushing and fighting for your answers, it’s so hard and there were times I was tempted to give up, but in the end you’re your best advocate for your own body! I hope this helps and good luck x
Thank you very much for your message! I'm not too sure on the specialist he apparently just done his training to be a consultant. He said to me sorry if TMI ... That most of it cut out easily but there were a couple of bits that were harder as they were more stuck. Other than that I don't recall much. They gave me some photos of what they found but I don't know what organs they're attached to. I've had to Google to try and work out where and what the organs are. The secretary said she'd try and refer me to the specialist unit but depends if I meet their criteria. That's all I've been told. There seems very little support about considering its a life time illness! Has your pain improved since the surgery?
That’s very unfair on you, you should definitely have a post op or some kind of report of findings! I’ve found it improved for a few months, however more recently it’s getting worse again, it’s definitely no cure but for a few months I had “some” relief, albeit not completely.
You’re definitely right about the little support though, even with an endo specialist now, I’m only under her consultancy for a year and then I’m discharged back to my gp and general gynae, which seems ridiculous as I’m now diagnosed! Women’s health really is very underfunded and researched.
I am in the same boat. I had a laparoscopy about a month ago which revealed endometriosis that they removed. I haven’t got a follow up until August. I have been in the same amount of pain as before and not sure if it’s because I’m still healing inside or because it hasn’t worked. I have had 2 periods since and they have been awful!
I also wasn’t really expecting the diagnosis as they said they probably wouldn’t find anything but they did! I have so many questions and my GP have said that I need to wait until my follow up!
Gosh that sounds similar situation to me. My hospital don't do follow ups they've said it's just back to my GP. They said they would look to see if the specialist Endo unit would take me on but couldn't guarantee it. Never know anything like it. I had surgery was out 3 hours later with very little info and then no follow ups.I did read on one website it can take 6 months for internal wounds to heal, but that's what I read on a website that does the treatment privately. Most of what I've found out has been online based, but is nice to hear other people's experiences ad it feels so lonely! I hope you see some improvement soon! Are you on any contraceptives or the coil? I'm on the no break pill, very light bleeding currently and the pain is horrible! x
Aw yea sometimes meds help with something but then causes other issues. I was in lucette for years but I think it was masking symptoms. I hope you get some relief soon! X
I had surgery about 7 weeks ago now and was feeling the same way. I had/ have stage 4 which they mostly excised but had to leave some in due to risk of hysterectomy which I do not want at the moment. I’ve just had my first period which was hell on earth. However, my daily symptoms that I used to get are definitely feeling better after 7/8 weeks
Thank you very much for your reply. It has certainly given me some hope. I'm sorry to hear you have stage 4 Endo. Are you on any pain relief or contraceptives? X
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Newly diagnosed and looking for info
Hello 
Had lap and they couldn't remove any and now on prostap!!
