Feeling very lost after my second appointment with gyni😔

[30withendo]

I'm feeling a little lost today. I've just been to my second appointment to see my gyni because I've been suffering with chronic pain on a daily basis since my lap in July. Only to find out that she is now removing me from her care as she no longer feels she can help me and has done all she can ie (removed all endo and adhesions) she thinks that my pain is not endo related because I only get pain before and after my menstrual cycle (not during). She also said that if it was pain due to endo that the pill I'm currently taking (microgynon) should of at least taken some of the pain away or eased it slightly. She has decided to now send me to a bowel specialist as she feels gyni is no longer the department for me anymore 😔 I just don't know what to think and feeling confused by it all. I'm currently not on any pain relief other than ibuprofen 800mg because my doctor just doesn't know what to give me anymore. I've had every pain killer given and it's done nothing for me ie tramadol, mefenamic acid, diclofenac many more and now I'm on amitriptyline which is not doing anything. I'm just fed up and confused by it all. It's all just so draining mentally and emotionally.

[squidgy]

Oh bless ya. It is so frustrating the endo journey we have to endure.

How long ago was your endo removed and where from? If she sending you to a gastroenterologist re bowel then the gynae obviously thinks you have bowel issues but is silly she not suspecting it is endo on the bowel!! Endo is not taken away and that's it you are cured. It can grow back and if affecting other organs that she has not seen then you will still be suffering.

I would ask your GP for a referal to a BSGE centre to see a specialist. There you can talk about all your symptoms, take any copies you have of scan/op results and go from there. Not be fobbed off just because a general gynae doesn't understand endo. I know it a pain to keep having to fight, but hopefully in the long run results will be had.

Best of luck to you and hope you get listened to soon x

[30withendo in reply to squidgy]

Hello squidgy.

Thanks for your reply, my endo was removed on the 7th July this year along with the adhesions at the same time. She said that she had removed it from somewhere near my bowel and was only minimal. And it certainly wouldn't be coming back so quickly, neither would the adhesions.

I was thinking of going ahead and seeing what the bowel specialists will say,and if I wasn't happy then asking my doctor to refer me to the bsge. At the minute it's a private hospital I got to,but through the nhs that's why I was thinking of seeing the bowel specialist before asking my doctor to refer me to the bsge. But I also know ill be waiting a long time for that appointment to come through too. It's all just one big waiting game and suffering in the mean time.

I also asked my gyni why I had adhesions because I've never had sugary before. She said that I must of had some trauma to my bowel like an inflammatory disease, so I just don't know. X

[Froggy34 in reply to 30withendo]

Hi

I've recently been through something very similar myself.

I've had cyclical bowel issues and pain for the last 2.5 years. Ends was confirmed 18 months ago and I had a hysterectomy in January this year (but kept my ovaries). My pain continued after the hysterectomy and was getting worse. I started experiencing bleeding and lots of mucus from my bowels. My gynaecologist said the same thing as yours. He said it couldn't possibly be Endometriosis as he removed it all and so he discharged me from his care and referred me to the colorectal surgeon. I felt very deflated at this point because after 2.5 years and two surgeries I was getting worse not better. I was very tearful after that appointment!

I've since seen the colorectal guy and had a colonoscopy last week. It showed areas of inflammation and bleeding in several areas throughout my colon and they took about 12 biopsies. I have to wait 4-6 weeks for the results but the person that did the colonoscopy said that there are areas that look like endometriosis has infiltrated through the colon. I'm so pleased to be finally getting somewhere now - I never thought they would find anything. It's definitely worth seeing a colorectal doctor if you are having issues with your bowels. It's infuriating that we have to fight so hard to get any help with this disease and have to endure surgeries and drugs that don't really help. Stay strong and keep going. Fingers crossed that they can do something for you. Hugs. X

[30withendo in reply to Froggy34]

Hi froggy34

I'm so sorry to hear what you're going through and still going through. So do you think a bowel specialist will help ? Is that what a colorectal is. I've never heard of this so it's new to me. I hope I get some answers soon and a diagnostic. As I'm sure a lot of woman on this forum do also. So sad what we have to go through.

[Froggy34 in reply to 30withendo]

Yes a colorectal surgeon is a bowel specialist. They may be able to help you. It's worth a try. See the doctor that you're being referred to and if they won't help you then push for a referral to a BSGE centre. Fingers crossed that it all goes well for you. X

[30withendo in reply to Froggy34]

Thank you foggy34

I'll see how it goes. Hopefully I might get answers through the bowel specialist then. 😊 X if not ill get my GP to refer me to the BSGE. Thank you for your help and advice it's very much appreciated. X

[squidgy in reply to 30withendo]

Best of luck with it all. Yeah can understand still seeing the bowel specialist, even if it just so you can say I've done what you said now refer me to....

One thing I will say, which you prob already know, if you have a colonoscopy it will rarely show endo as it only usually visable if the endo is deep infiltrating. BUt if endo is on the exterior only then it wont show during one of these. Plus the gastroenterologist may not be used to looking out for it either. I was once told by a bowel specialist that endo doesn't cause bowel problems, despite me arguing the case for it does. So keep fighting. Wishing you all the best and hopefully you will get an understanding bowel specialist x x

[Cma89]

So sorry that you had to go through this, doctors really need to take this more seriously. It's such a draining disease and they just expect you to get on with it.

Like the other ladies have said, try and get referred to a bsge clinic. I hope it goes well xx

[30withendo]

Thank you Cma89

And yes you're right it does need to be taken more seriously. All these women on here and the pain they suffer is not on the thing's we have to through to get the right help is just so tiring 😔 I'm going to see what the bowel specialist says, if I'm not happy or don't think I'm being listened to then I will most definitely ask my GP to refer me to the BSGE X x thank you for your advice 😊.