Am I entitled to see an endo specialist even though the laparoscopy showed nothing?

[Suzileverell]

I am feeling really down at the moment because I don't seem to be getting any answers. Sounds petty extreme but I have been in tears about it all.

I had a laparoscopy with a general gyne last year and no endo was found and I was sent home with no follow up. I just got told I will be fine now because my ovary was stuck and it's been moved back now. The pain will now go away.

Since then I have been backwards and forwards to the Drs still trying to get answers because my symptoms are not getting any better. I asked them if I could get a referral to see specialist I had found at Norwich hospital. I was then told "I don't have endometriosis so why do I want to see one?" I then said I have heard story's of it being missed during a lap with a general gyne and I want help with my symptoms and to know what's going on with my body. He then said it can't be missed during a lap and that it's good because endometriosis can now be ralled out. Is this true what the Dr has told me? Can endometriosis be ralled out now? I know I should be pleased if it has but I just feel so frustrated because I want to know why I'm living my life in pain.

Since then I have tried antibiotics for PID and I finished them about a month ago the only symptom that has gone since I've taken it is brown discharge inbetween my periods. So I went back and I was told it can take time and just to keep taking the pill I'm on and the mefenamic acid for the pain. They did say they will send me back to the gyno again if it doesn't improve. The problem is I'm not sure if I'm better off seeing the same gyno or seeing a specialist? I have seen every single Dr and nurse at my practice and they have all admitted they don't know what's wrong with me. They have all said it sounds like endometriosis but because none was found it can now be ralled out.

My symptoms including, painful periods, extremely painful sex during and for about a week after, sciatica in my left hip, back pain, IBS, lot's of different infections, ovary sticking to my pelvic floor, extreme tiredness and a constant period if I don't take the pill. I also have PCOS.

Me and the Drs have no idea on what els it could be I have had so many different test that have shown no logically reason for my discomfort. It's making me depressed. Which is why I have asked to see a specialist but they are so sure I don't have endo because my lap results they won't give me a referral.

Not sure what els I should do and if they refer me back to the same gyno what els can they do to help? What questions would I be best asking? All I want is some kind of dyagnosis so I know I'm not going crazy and to have some understanding from other people and to actually have treatment for something I know what the treatment is for.

I'm also missing so much work because of this and it's hard explaining to people about it because I don't even know why I'm feeling so ill all the time.

I just want to know if I'm still entitled to see a specialist or not and doese it sound like I could have endometriosis? Xxx

[Hannah307]

Hey, definitely keep pushing for a second/third/fourth/hundredth opinion. Was the laparoscopic taken in just one area? Because Endometriosis can grow elsewhere, not just your ovaries. I was told countless times that I didn’t have a right ovary until after several interval scans, the surgeon actually went out his way to look underneath my bowel, which is where it was hiding. I moved to Manchester in 2015, that same year Salford Royal sent me straight to gynae and took me really seriously. If your doctors aren’t considering helping out more, I’d suggest finding medical advice elsewhere. Easier said than done I know. Endometriosis can take a long time to diagnose but don’t give up and don’t settle for the same medical professional. I hope this was a little helpful, I’m still new to this whole thing x

[Suzileverell in reply to Hannah307]

Thank you for your reply and advice I really appreciate it!

From what I was told they only looked round my ovaries they did show me pictures afterwards and they were only of my ovaries. That's interesting what you say. I did go and have a colonoscopy done last year has well and the Dr who done it said endometriosis can be found in pretty much anywhere of the body. He's the only Dr who seems to think it was missed.

Thank you again it's just nice to have someone else's opinion and to have some reassurance I'm not going crazy. 🙈 x

[Hannah307 in reply to Suzileverell]

You’re definitely not going crazy, I’ve been thinking “it’s all in my head” for years and the relief I had last year when I got the diagnosis - just don’t give up xx

[Suzileverell in reply to Hannah307]

Thank you! How long did it take for you to get a dyagnosis? Hope you don't mind me asking xx

[Hannah307 in reply to Suzileverell]

Of course not - Investigations went on for about 2 and a half years - even though gynae were on it, I was still waiting for countless tests ect. I ended up in A&E most of the time with ruptured cysts :/ it’s been about a year since my last surgery and I can already feel it’s growing out of control again xx

[Suzileverell in reply to Hannah307]

I'm so sorry to hear it has taken so long sending healing thoughts xx

[SimplyDeeDee]

Don’t give up always push. I know it seems like an endless fight but if you’re losing the strength to keep fighting find the strength from your pain. I stand by ‘you know your body best’ and are living with the pain and discomfort so they need to listen. Demand to see a specialist, plant yourself in their office until you get something.

It took years before I had my diagnosis. I was back and forth to my GP, given so many different pain reliefs, different pills, implants and injections until I just snapped. I did just that planted myself in the office and wasn’t taking no for an answer.

Ask for you laparoscopy report from you hospital. This will tell you which areas they checked for endometriosis. Do some research on your symptoms and take it all with you to your GP.

Do you have a pain/symptom flair diary? If not start taking one and be very descriptive on where you are feeling discomfort. The more information about you, that you have the better.

[Suzileverell in reply to SimplyDeeDee]

Thank you! It's such a shame how all of us have to really push for such a common thing. :/

One of the Drs gave me the report when I asked about seeing a specialist. He told me to read it so that I can see there's nothing wrong and to prove that I don't have endo. I was quite shocked because all it said was that there's no evidence of endometriosis but my right ovary was adhesed to the pelvic floor wall. This was moved back into place and I will now be free of pain. It said nothing about where they had looked but they did show me some pictures and they were just of around my ovaries. I felt quite let down by it all because now I'm still suck with theys symptoms with no logically reason.

That is a good idea. I did keep one before my lap to show the gyno. But since I've had the lap done I have sort of given up with it because no one seems to pay any atention to it anymore. I'll start doing it again now you've mentioned it and try showing them again. X

[Mewesy]

Hi, aww i understand where u are coming from, I’m not sure how much more I can take, I was diagnosed with endo about 13 years ago but for the last 2 years I have been off work, I fell pregnant with my 2nd miricale baby and suffered really bad pain, so bad that I was put on oral morphine while pregnant. I have been taking it for nearly 2 years now, I’ve had a lap 2 weeks ago and they say they have removed scar tissue but no endo was found, so they don’t know what is causing me to be bed ridden, in agony with pain in my pelvis, back and top of my legs everyday, im tired all the time, I’ve lost weight due to not eating. I’m not sure what I can do next, I don’t know where to turn or what to do, I just know I can’t cope with this pain for much longer. Hope you get sorted out, sorry I can’t offer u anything positive, just wanted to let u know I understand what you are going through! X x

[Suzileverell in reply to Mewesy]

Thank you for your reply!

That's so awful your in that much pain and nothing is being done about it. I hope you get sorted soon. We are all in this together 💕 x