Pelvic pain clinic meeting left feeling hopeless

[Hazel173]

I had my pelvic pain clinic meeting today with the endo specialists, basically they just ignored everything I tried to tell them though. I was diagnosed with endo and had it surgically removed in November and it was stage 1. But I have still been suffering severe pain especially before my period is due along with other symptoms such as nausea, bloating, stomach issues and acne. But basically the specialist said the pain im suffering cant possibly be endo pain as it was removed for one and second the implant and coil didnt help me. Apparently if it was endo pain the mirena would have helped it. As for the nausea they said I am only suffering nausea because I take anti sickness tablets. I feel so hopeless right now as the doctor also said I will have to stop taking codeine, which is the only thing that helps me even get out of bed on good days. I don't know what to do anymore, they are sending me for a mri to check just incase but I thought endometriosis was only diagnosed through lap surgery? I feel like they dont believe how much pain I am in and were just brushing me off. This was with the endometriosis specialist aswell, has anyone had this experience? Should I save up and pay for a private consultation? I just cant cope with the pain I get before and during my period it leave me crying in pain and can't even imaging going on like this. Please can someone give me some advise because I honestly feel so hopeless right now. I was looking forward to this meeting but it has just made me so depressed to think of having to live my life like this. I have tried loads of different medications and nothing has worked. Im only 25 but would even consider a total hysterectomy if that would help, I want more children in the future but I cant deal with this crippling pain all the time.

[Blossom39]

Are you on Facebook x

[Boodie]

Hi there, I'm sorry you are having all this trouble. I've been having trouble since dec 2015 when I was diagnosed with pelvic inflammatory disease. I've had recurrent infections living with chronic pelvic pain heavy bleeding. I'm currently on mini pill but having increased pain and bleeding. I too am also considering a hysterectomy as I'm so fed up with all of it. I'm childless as well so that's getting me down. Have anxiety about bleeding. Trying and trying not to give up hope and have positivity buts it's very difficult. Please ask me anything if you want to chat more. x

[Hidden]

Hi Hazel173

I'm so sorry you are feeling so bad.if you need to cry or scream then do so . it's ok to feel how ever you are feeling. Let the emotions out. Then you will have a clearer head to take on your next challenge.

Can you use this as a lifestyle change. Have a look at your diet, try some alternative treatments if the doctors will no longer help with medications.

Endo empowered website are doing a free drop my pain challenge course at the moment. Check out the website.( Sorry not allowed to post the website address )

Maybe it is some where you could start.

Sadly The doctors don't have all the answers. It's not their fault that they are not telling you what you want to hear.

It's now your responsibility to do some research and find out ways to help yourself.

So Take a breath and prove the doctors wrong. Find ways to help yourself control your pain levels ect.

I hope you find what helps you with making things more bearable soon x

[Fabbird]

Hi, these days MRI scans can sometimes pick up endo that’s difficult to see on a lap (they use a dye contrast to show it up). So good doctors tend to suggest both. If you still feel your symptoms might be endo, then MRI scan sounds like a good idea to me.

[Catness]

Hi Hazel173,

I’m so sorry you’re having such a tough time and your meeting didn’t go as you had hoped 😢 it must be hugely frustrating.

If you read any of my replies lately they all advocate for going private. In my experience the level of care and knowledge I received for my two private laps far outweighed the treatment I received on the NHS. If you did want to consider private then have a look on the private hospital’s website in your area and have a look at the consultants and see if any of them are specialist endo consultants or have an interest in complex gynae/ laparoscopic surgery. A private consultation is usually around £180 and sometimes the consultants are able to re-refer you into the NHS for treatment though this is of course down to their discretion and whether they work on the NHS etc. It may however be a good opportunity to discuss your case and get their impression of what is going on to see what your next steps could be.

When you say you had it surgically removed I just want to check you had excision surgery rather than abalation/ to burn it off? If the endo wasn’t removed through excision, and even if it was unless they got every single bit then chances are it has grown back.

Also I just wanted to advice you that there are a growing number of women who have had full or partial hysterectomies but who still suffer with endometriosis as the endo can grow anywhere. A hysterectomy is not a cure but can obviously ease some symptoms but thought I should stress that point 😬

I really hope some of that has been helpful as I really feel for you xxxxx

[Hazel173 in reply to Catness]

Hi, I have no idea what happened to me during surgery. All i was told was that I had stage 1 in a couple of areas and it had been removed. I never was given any follow up appointment. Im thinking about going private but as a single mum and nursing student it will take time to save up. I just wouldnt want to pay all that money and have the same results, or end up seeing the same doctor if he works both private and nhs. All I wanted out of the meeting was a better pain plan so during my period im not bed bound, help with the nausea and a plan to stop the endo growning back but I just feel im much worse off after the appointment now. Ive to basically stop my anti-sickness tablets and codeine tablets but they are the only reason I can get out of bed and not run straight to the toilet to be sick with the pain. Without my antisickness tablets I also cannot eat. My diet is bad enough as it is, any fruit or veg gives me terrible diarrhoea which makes it difficult to follow the endo diet. I tried gluten free and it helped with the bloating but not with any other symptoms. Sorry I am moaning here I just feel so lost and cant stop crying since Ive came out of that appointment. X

[Catness in reply to Hazel173]

I’m not surprised you can’t stop crying 😢 what reason did they give for stopping the codeine and antisickness?

At least you are having the MRI so that’s good and if you did go private? You choose who you see although I do hear what you’re saying in regards to it being expensive.

Another idea may be to call endometriosis UK’s helpline and see if they have some advice too.

I’m so sorry though. Where shouts in the U.K. are you based?

Xxxx