Some advice please🥺

[EmmieKimberley]

Hi loves, this is my first post on here and I’m really looking for some advice.

I was diagnosed with endometriosis in 2017 via laparoscopy by my local hospital gynaecology team. I’ve currently got the marina coil as I can’t have any form of contraceptive pill due to my chronic migraines. Currently I’m still struggling severely with all symptoms. Heavy bleeding, long periods (most recent was 43 days), PAIN obviously and the team I was seeing did not take me seriously. I went to pain clinic where I was told to use a 10’s machine, which I do but it doesn’t help in the slightest. Anyway let me get to the point of the post which was, the gynaecology team have discharged me without any notice and the only way I found out was through my gp today after requesting to go to another hospital as I felt like the team I was seeing didn’t care. I’m not sure where I go from here really. I don’t think I’ll get referred back due to the negligence on there behalf. I’ve also been told in 2020 an mri I had showed a mass on my ovary which was never looked into.

I was thinking of going for a private consultation with a gynaecologist for there point of view and a plan in action on the what needs to happen next so I can hand it back to the GP.

What would you do in this situation? I feel like I’ve hit a wall. Currently have no plan in place, no medication for the bleeding or pain.

[Dani85C]

Hi sweet, I’ve been diagnosed with endometriosis recently I went private as I’ve really struggled with NHS! I had an MRI which showed mass between bowel an uterus & right ovary - other masses and cysts too. Within 2 weeks I was booked in for operation to remove the Endo.

My consultant was amazing. If you can I would definitely recommend going private I no we shouldn’t have to do this? But it was the only way for me I couldn’t cope any longer.

I really hope you get sorted soon! This is a terrible condition debilitating! My life for years has been ruined! No social life! Not going places, etc etc pain so bad depression.

I too suffer with migraines I’ve never been able to have any contraception after my children I had to be sterilised.

[EmmieKimberley in reply to Dani85C]

I get you so much, the depression side is also so awful. I should be out with friends as a 22 year old, yet I’m planning out my future (children wise) because of the uncertainty and literally have no social life because of this horrible condition. I think private consultation will be able to give the gp a push hopefully.

We shouldn’t have to go private, it’s so common yet when we talk about it most people haven’t got a clue what we’re going through. You’re all so lovely on here🥺🥺🥺🥺🥺xx

[Dani85C in reply to EmmieKimberley]

Aww sweet your so young too! Definitely if you pay for consultation to see a consultant that may push it forward on NHS.

Such a shame that so many people have to suffer.

I’ve been fighting for 10years an it’s just got that bad I live on painkillers an now will have to wean myself off them as I’ve relied on them to stop my pain for so long

I really hope you get the help you need I saw an amazing consultant at spire little Aston (Birmingham way) Dr Kumar I can’t believe how amazing he was. My relation works at the hospital so recommended him within a week of seeing him I was booked in for operation.

Fingers crossed for you & sending lots of love 🥰

[Cailleach]

Your GP should be able to help you with medication for pain and to reduce the bleeding. You should also be checked for anaemia due to heavy/ prolonged bleeding. Ask about the follow up for the mass on your ovary as well. Your GP doesn’t seem very proactive and maybe needs a push, maybe you need to change GP?Did the pain and bleeding increase with the coil because some people do find that? If you have not had the coil long, sometimes it settles down. If you think it is coil related you can ask for it to be removed. Of course you would then need to use another form of contraception. Your GP should be able to refer you to another Gynae team. You should be treated by a Gynae with a special interest in endo as you are already diagnosed. Have a look at the NICE guidelines for endo which you can Google for what the treatment pathway should be.

Seeing a consultant privately might be worthwhile, it will certainly be quicker. Check they are an endo specialist and not a general Gynae. If you Google BSGE (specialist clinic) in your area you will get the names of their consultants and can then check online if they work privately as well.

Hope you can get some improvement soon.

[EmmieKimberley in reply to Cailleach]

I’ve had the coil on and off for about 5 years as I’ve had non stop issues with it. It’s difficult as I feel like this is my last resort as I didn’t respond well to contraceptive pills due to migraines and worsening of depression🥲 thank you so much, I never knew about NICE guidelines or BSGE, going to look into them🥺🥺

[CArolGrace]

I asked my gp to refer me to another hospital. This meant that a whole new set of eyes were able to look into my case, it’s crazy but believe me start back at the gp and explain to them the situation. Compassionate gps are the front line of starting your process again, it’s frustrating but possible to move forward , I hope you can find help and support this way x

[EmmieKimberley in reply to CArolGrace]

Thank you so much, i think this is half my problem. Most GP’s aren’t compassionate at all. Going to see if I can see a different GP along with a second opinion🥺x