Wrong Specialist! 😢: I honestly could cry... - Endometriosis UK

Endometriosis UK

70,118 members51,935 posts

Wrong Specialist! 😢

Keely88 profile image
3 Replies

I honestly could cry! So I have been waiting to see an endometriosis specialist for 13 months and then developed a more severe, constant pain that I’ve never had before. This has been going on for almost 3 months now of constant pain and intermittent bleeding, despite being on the Evra contraceptive patches. My appointment was on Friday and I thought finally I will have a plan or something, I wasn’t even seeing the endometriosis specialist and have now got to be referred as an urgent to them. I feel like I’m back to square one, This is almost 3 months of constant, daily pain. I’m not sure how much more I can take. 😭💔

Written by
Keely88 profile image
Keely88
To view profiles and participate in discussions please or .
Read more about...
3 Replies
lin1992 profile image
lin1992

I had constant pain like that, although not the typical endo pain, just concentrated in one spot where my left ovary is. It was waking me up every night in the early hours of the morning, and I was living on paracetomol and ibuprofen and eventually cocodamol and oramorph when my GP finally prescribed them, but my life was just a rollercoaster of unbearable pain, taking painkillers, lying on a boiling hot water bottle waiting for the painkillers to work, sometimes waiting an hour or two for them to work then realising they weren't going to touch the pain, then taking some oramorph in desperation, then almost instant pain relief but then having to try do my laptop work and housework, and make meals and care for my husband for the next few hours feeling lightheaded and dizzy...like I'd had far too much to drink (not something I'd ever experienced before!) :( It was during strict lockdown and so I was unable to see my GP after the first appt, so just kept booking telephone appts every time the pain became unbearable again, and asking my GP yet again if there was anything else he could do for me (I'd never even heard of endometriosis at this point!) Eventually he sent me for a couple of ultrasounds a few weeks apart which confirmed I had a 6cm chocolate cyst/endometrioma on my left ovary which was typical of endometriosis, and so of course I started researching endometriosis and so did my Mum with a vengeance! My Mum thankfully knew of someone my age who only lived a few hours away who had it, and so she spoke to her to find out which specialist she had seen and to find out about surgery etc. So thanks to my Mum and my fellow endo sufferer, I could quickly look up all about this endo specialist online and even book an initial consultation with him for £150 for a few days' time! In no time at all I had seen him and shown him my ultrasounds and blood test results showing CA125 of 62 indicating extremely high levels of inflammation, and he recommended immediate surgery via laparoscopy which he was able to do in a matter of weeks privately, over against waiting 9 months at that time on the NHS with risk of it being cancelled anyway as we were right in the thick of Covid, so I opted to have the surgery done privately despite the cost, as I knew I wouldn't be able to survive another 9 months plus of those pain levels. The past 6 months of gradually intensifying agony were enough! Thankfully since the laparoscopy I have never been back to those pain levels, so the surgery definitely helped, although I do have sharp pain in my left ovary again now, but that is probably because they weren't able to remove the endometrioma, only drain it down, as it was stuck to my bowel and they would have needed a bowel surgeon present to remove it, so they warned the endometrioma could fill up again, which I have just had confirmed with an MRI showing it's about 2cm. My advice to you is to reach out to someone in your area with endo if you know anyone to find out what endo specialist they saw, and try researching them online and booking an appt direct with them if you wish. Otherwise check out topdoctors.co.uk to find an endo specialist near you and book an appt direct with them if you wish. Otherwise just keep chasing your GP/whoever your referral is waiting on, and as soon as you get details of a new department that the referral is in the hands of, ring them and they may be able to book an appt there and then. This is what I've learnt to do, just keep chasing and being proactive at every stage of the process, and it gets you places much faster than just waiting for them to slowly go through the process. Hope this helps!

Keely88 profile image
Keely88 in reply to lin1992

I’ve suffered with severe pain, periods and bowel and bladder issues since I was 10. I got diagnosed with stage 4 at 17, so I’m used to the endometriosis pain, this is like nothing I’ve ever experienced in my entire life. I’m done with it now though, I want a hysterectomy now, I have tried every treatment hormonal and surgical possible. I have no quality of life, I can’t work at the minute, I can barely walk some days. I was only seen of Friday but if I’ve not heard anything by next week I’ll be on the phone. Im absolutely cured now.

lin1992 profile image
lin1992 in reply to Keely88

Oh dear, so sorry to hear all that you've been through and still going through. I was diagnosed with Stage 4 endo during my first laparoscopy and now have just had an MRI for the first time which pointed up adenomyosis and DIE, and they're recommending another lap. Sorry to hear you were diagnosed with this at 17 though! Around that age I remember struggling with extremely painful bowel movements when I had my period which I just thought was normal, fainted on the toilet with it once before school and hit my head hard on the wall. Always had heavy periods and many leakages when I was young, including it running down my legs in streams one day when I got off the school bus. Had some days of unbearable pain where painkillers wouldn't touch it and I spent the most part of a day doubled up in pain and crying unconsolably. Was another 12 and half years before I was diagnosed with endo! When I left school and went to work I had more control over what I ate for lunch and I'm sure it is only healthy eating and maybe slightly less stress (not much though!) and increased exercise which kept the pain/endo in check for so long.

If you have tried everything hormonal and surgical wise, why don't you try herbal medicine? I have heard of several who have been 'cured' of their endo symptoms by Hydes Herbal Clinic. They make a bespoke supplement suited to your needs. Worth a try maybe?

You may also like...

Endometriosis specialist

hysterectomy would be the cure, or 2 see an endometriosis specialist that has started a clinic at...

Gynaecology specialist

sound like endometriosis (really painful periods, heavy irregular bleeding, back and thigh pain,...

My 'specialist' says that if I am having pain whilst having Prostap injection's, then it can't be Endometriosis. She's wrong isnt she?

mentioned pain despite having Prostap injections, so I know it's not just me. So when my specialist...

Private/specialist consultant

stage 4 endometriosis. Pouch of Douglas obliterated by adhesion. Laparoscopy done, endometriosis...

Endo specialist -private?

pointless taking it. (All in all its been almost 2 years of trying now, but this year has been...