Do I need a second opinion?

[Bells1912]

Hi, I'm new to this website and I am here to try find some advice!

I have recently been diagnosed with endometriosis after 3 years of backwards and forwards between GP and consultant including gynae and gastro in which I was told nothing was wrong with me. After quite a serious flare up landing me in hospital for five days I was offered to come back as an outpatient for another laparoscopy to check again for endometriosis after an ultrasound revealed the positions of my ovaries could not be distinguished.

I waited six months for this laparoscopy and before I went down for surgery the consultant told me that she would be very surprised if she found anything. Low and behold I woke up to be shown pictures of my ovaries stuck together, my left ovary pulled across the back of my uterus and stuck in place causing my uterus to be immobile and what appeared to be my fallopian tubes also adhered to my uterus which itself is adhered to my pouch of Douglass. There was evidence of endometrial cysts on my ovaries as well as a small patch of endo on my bowel, the consultant then referred me to the endo specialist under the impression I may need surgery. I also had an MRI after this which confirmed the locations of everything seen in the Laparoscopy.

When I went to see the specialist, who told me three years previous there was nothing wrong with me and to try changing my diet and exercise, they simply would not even entertain the idea of surgery. They didn't give my endo a stage, they said I was too young (I'm 25) and that I need to try the pill and prescribed my amitriptyline for the pain which I already mentioned I don't tolerate well.

I am in pain every single day and nothing helps, I have tried all the diets, exercise and the pill as mentioned and there are no changes except my mood is lower than ever. I am starting to think I need to get a second opinion, has anyone else experienced this sort of dismissive 'advice'?

Any help or tips would be much appreciated!

[Lils9510]

Heya! I'm in the exact same boat as you at the moment, I was diagnosed with Endo nearly a year ago now and they didn't give me a stage or anything they just told me that they found it in 6 different places.

They also just gave me painkillers and that was it, after the surgery it was left as an "open appointment" which I only got as I had to complain as the hospital didn't get back to me for 3 months, i saw the Gynecologist today and they basically said that I need to deal with it and that I'm doing "everything right" I'm on 6 different pain meds to "help" with the pain and I have been for nearly a year now and nothing, they said they are going to arrange an appointment for 6 months time to see if it gets any better.

I'm on strong painkillers where the side affects are horrible, but it is the only thing that can touch the pain but I can't go to work or drive whilst taking them and I explained that to the gyne today all of that and how I need to take them nearly everyday because of the amount of pain I'm in but they just fobbed me off!

I'm now looking into going privately for a second opinion as I don't believe that I or anyone with this condition should be treated like the way we are with free healthcare.

My mood is also horrendous due to the pill I am on which also hasn't helped so I completely get you on that!

All I have ever received is dismissive advice too and was also told that it wasn't anything to worry about and I just went through years of pain too!

If you ever need to talk about it feel free to message me x

[Bells1912 in reply to Lils9510]

Thank you so much for responding, sorry it’s been so long since I logged on! I’m so sorry you are experiencing this it’s just awful, I can’t believe the lack of care surrounding this awful disease it really is heartbreaking. I hope you get somewhere soon! X

[Cailleach]

Yes, I think you should go back to your GP and ask for a referral to another gynaecologist, as you have been diagnosed with endo, this should be a gynaecologist with a ‘special interest’ in endo. An alternative would be to seek a private consultation, if you can afford that. You can refer yourself and would probably be seen quite quickly. That doesn’t mean you have to be treated privately, but it would hopefully give you a better idea of what you should be asking for.

I think refusing to give you a ‘stage’ is unfair as it might prevent you from accessing a specialist BSGE centre. Have a look online at the NICE guidelines for endometriosis treatment, which your local health service should be following. If you look at the list of BSGEs online you could also then see if your nearest one has consultants who do private work, for a consultation.

Unless you know for sure you don’t want kids, you should also be asking about your future fertility and what can be done to ensure that.

In the meantime if whatever painkillers you are on are not working, go back to your GP and see what else they can offer. You have really had a pretty crap service so far from the NHS, sadly many of us have to fight to get what we are entitled to.

[Bells1912 in reply to Cailleach]

Thank you so much! I’ve had a look at the guidelines and will take them with me to my appointment tomorrow I wasn’t even aware I could access them so that’s really helped me structure some questions! X

[SHAREJOY]

You should definitely get a second opinion and hopefully with a doctor that respects your feelings and takes into account your symptoms. I have endo on my womb ovaries and am endometrioma cyst that might need surgery that I'm not ready for mentally, so was put on Visanne you can look it up its not cheap but can help if you have endo.