Had enough!

[Rae40]

Jeez, I feel like I'm just broken from the waist down! Diagnosed with endo 3 years ago,via laparoscopy. I manage (just) with over the counter painkillers, heat pads and rest when it's at it's worse. Last year was diagnosed with HPV and abnormal cervical cells after a smear, had a biopsy, all ok. However recently I've had bleeding and pain after sex, had period/endo type pains for 2 weeks constant. Had another smear at docs request, still waiting for results but they have found an infection (vb) I'm on antibiotics. I have backache and am going to the loo loads (wee) I'm always constipated and I get labour like pains when I do go for a 'number2'! The worse thing at the moment though is the fatigue, it's like I'm walking through mud and surrounded by fog. I don't seem to have the energy like I used to just a few months ago. I'm not sure why I'm posting, just wanted to vent I suppose. I'm so worried I have something even more serious, has anyone else had multiple problems or similar symptoms to me? I feel rubbish and waiting for results is horrible

[Hidden]

When you were diagnosed did your surgeon remove any endo? Were you given a stage of your endo and told where it was located?

I understand how hard it gets and how sometimes it seems impossible to try to be positive. Have you had any benefit from trying the endo diet? I have found its really helped me. Omega 3 also helps a lot to keep my pain under control xxx

[Rae40 in reply to Hidden]

Thank you for your reply x I have no information about my endo, when I was diagnosed I had little idea of what it was and so I didn't ask the appropriate questions. I'm pushing at the minute for another lap so that I can be better informed about how it's progressing and what my steps can be. I was also told at the time I had fibroids. I haven't had any surgery or treatment. Was put on hormones for a while but they didn't agree with me. I have so many other things wrong 'down there' it's crazy! Not tried the diet, will look into that thank you x

[Heloo85]

I've been exactly the same, except 1.5 years later in still being investigated. First off I was diagnosed with PID after a million STI swabs clean. It took the gun clinic to take a slide, and well my cervix falling apart was a bloody good indicator something was up. It was unknown as no one bothered to do a culture. I was then sent for a lap, where as an ultrasound showed fluid in my bowel loops and a hydrosalphinx. My first surgery lasted 5 mins! Not joking. Opened me and shut me straight back up as couldn't do anything. I was then put forward for priority surgery! I waited 12 months for that. All the while the same and wishing this surgery would hurry up. So 3 months ago I had major surgery with some complications, so when I come home I wasn't well, and proceeded to get worse and worse. Now they think I have a separate bowel issue and back under another colorectal surgeon. Get to the Drs and get tests. Feel for you, it's horrible!

[Rae40 in reply to Heloo85]

Goodness you've been through the mill a bit haven't you?! I hope they get you sorted, sounds really terrible. It's the waiting around that's the worse I think, the feeling that nothing's being done or you're not being heard quick enough. Sending love to you xx

[Heloo85 in reply to Rae40]

Thanks and hopefully they'll sort it but don't make same mistake as me .. Get every single symptom investigated properly. I got seriously mucked around. First surgeon went of ultrasound, didn't take any pics, then sent a vague message to the endo team stating that I need priority surgery but not really explaining why! That was then ignored for a while, finally got an appointment, sent for another ultrasound but this one showed nothing!? She swore she had seen everything, both ovaries, my fallopian tube was fine!? It was so clear my new surgeon was trying to talk me out of surgery!? .. So i said absolutely NO WAY so he put me down for intermediate surgery!? Colon surgeon didn't even do any investigations whatsoever!? They both went in, and well my surgery was then upped to major, during surgery, cuz they both got it terribly wrong. And not only that, my endo, 12 months earlier was bad, but left side only! At this point it spread to both sides. But my God, I've had to fight tooth and nail. And no way did that sonographer see my ovary as my diseased fallopian tube was wrapped around my colon, with my ovary stuck behind it with a huge endometrioma! But now I've been told my bowels are inflamed 😂😂 .. so having more investigations .. The length of time they take us us joke. I hope you don't get out through the mill like me! Good luck with your treatment! Xx

[Rae40 in reply to Heloo85]

And these are the people we put our trust in! Sorry you've had to fight, chin up, you are one strong lady xx

[Heloo85 in reply to Rae40]

I've been back and forward from drs since January as I seriously thought I was dying. I was told constipation, ibs, I've had 2 Drs give my abdomen a good feel .. One said "oh you're full" and the other after an internal said "oh you ain't constipated". I was then sent to a colorectal surgeon who just took one look at my abdomen, without even laying a hand on me and said "your bowels are inflamed". Like how did 2 gps miss that!? Scary world. I've got a consultant who's listening to me ramble 😂😂 so I hope to God it gets sorted! I certainly no how you feel, it grinds you down! The waiting is ridiculous! Xx