Thinking about giving up on diagnosis

[CitizenErased]

Hi everyone.

I finally had my first consultation at an endometriosis specialist centre. I saw a female doctor for the first time ever since my problems started a few years ago, which was nice. She couldn't believe that my GP surgery wouldn't let me continue with the combined pill and said I would HAVE to get the coil or the implant, both of which I didn't want. (I just got my partner to get a vasectomy in the end.)

She has put me on the mini pill instead. I've never had it or been offered it before so I guess we'll just have to see how that goes. I asked for an MRI (again) but she said the radiographers will probably reject it. I said it's ridiculous that I can't get a simple scan in order to rule out anything other than endometriosis. I know laparoscopy is the gold standard for diagnosis, but if there's even a small chance that I could get a diagnosis through the MRI as I know some of you have, why wouldn't I want that instead of surgery?! She couldn't answer that.

If the MRI does get accepted, I will have to go for yet another blood test. I don't understand why, she just said they have to check everything is normal in my blood before I can have an MRI. But the time before last that they took my blood, it took three attempts and they eventually had to take it from my hand. The time after that, they gave up entirely. I'm not exactly needle phobic but I absolutely hate getting blood tests. I'm thinking about just giving up on getting a diagnosis. If they reject the MRI, she says she can put me on the wait list for surgery, but I don't think I want the surgery. The risks and mixed rates of success make me think it's just not worth it. I think I'd rather manage the pain with pain killers.

Has anyone else here ever just given up on getting a diagnosis? I'm just so sick and tired of going in circles and being poked and prodded and going on enormous wait lists. I feel like it might be better for my mental health to just manage the pain and other symptoms as best I can. Have any of you been in this position? If you have given up, did you end up regretting it?

[Tangoandmax]

Hi!

I’m sorry to hear you’re struggling. It honestly shouldn’t be so hard but every single step with this disease is a battle.

I had an MRI which ‘confirmed’ Deep infiltrating endo and adenomyosis. This was eight years after my first gp visit for unexplained pain. I’d had a number of referrals to local hospital gyne, ultrasounds scans that were all ‘normal’. The usual gaslighting/misdiagnosis. I’m not sure why they’ve said the MRI would be refused, that’s nonsense, Radiology will carry out whatever is requested if the consultant has deemed necessary, It absolutely sounds like a fob off to stick you on a waiting list. This happened at my last gyne referral with my local hospital. Had I not complained, I wouldn’t have had the MRI which finally confirmed I’m not crazy; and there is extensive damage. They mostly use as a tool to get an idea of what might be needed during surgery, if you pain is manageable maybe she’s thinking you can wait for the lap and then get the definitive answers.

What I will say is do not give up and just manage, I was forced to and I did blindly trust everything was they said (they’re the professionals) and I regret it every single day.

It’s not going to go away. The pill may help/slow it down but more likely it’s going to hide symptoms whilst it might be getting worse. I’m now in a terrible state. It might not happen for you, but it’s a gamble. You’ve got to fight for yourself x

[RosieFalkor]

I wouldn’t rule out surgery. It really not that bad! My endometriosis didn’t show up on multiple ultrasound scans, and on MRI they only found small amounts. Laparoscopy found it had spread everywhere including my diaphragm, bladder and abdominal wall.

[Doughnut_eater]

Don't give up, please. You deserve to be well and I'm sorry it's all been so hard and frustrating. I hear you.

I hate being fussed with and their continued need to give internals and scans because the wait lists are so long for treatments. I found blood tests are easier when I'm well hydrated and don't drink caffeine before the appointment. Mri are good but the laproscopic surgery is also used to treat the endometriosis, it gave me 5 years of normal menstrual cycles before it all went wrong again so I felt that it was worth it..

[HT267]

Hey citizen erased,

I kind of had a similar journey to you in that I pushed and pushed for a diagnosis until my early 20s then just gave up and figured 'this is normal nothing is wrong with me'. Then my symptoms rapidly deteriorated in my early 30s and they finally gave in and offered me a lap only to find that I had loads of adhesions and was infertile. Had I not had the surgery when I did they wouldn't have been able to restore my fertility so I'm glad I had the lap. I guess for you it's weighing up the potential benefits of surgery. I didn't have the surgery for diagnosis I just wanted the pain to improve and it did but I hear what your saying about mixed results. It did take 8mths to feel the benefit of the surgery. I would say don't give up as it can really damage your body if left in there but that's based on my experience.

Re the MRI I would say go private to get that it costs 800 ish but atleast you would then know if it shows up on there rather than jumping through the hoops which after years of fighting is just exhausting

I wish you all the best xx

[Twin4Life]

Just some advice for future blood tests. I know the NHS don't tell you anything about preparing for blood tests. But, you should drink lots of water before having your blood drawn. The more hydrated you are the easier it will be for the the person drawing your blood to find your veins.

I have had many, many blood tests over the years, and everyone has a difficult time finding my veins to draw the blood. It is awful being poked and prodded multiple times. However, if I drink a big glass of water before the appointment, and I mean like 15-20 minutes before the appointment, it usually makes it easier for the phlebotomist to find my veins and draw my blood.

[Palomino13]

Sorry to hear of your pains!

If you think an MRI would help I suggest May be better topay privately, this will speed things up for you. There is no gold standard treatment with the NHS unfortunately. I ended up paying for my surgery after waiting for a laparoscopy for over 7 years.

Whilst the MRI can show DIE it doesn’t give the full picture of what’s going on inside. My case ended up being so severe with deep lesions all over my bowl that the surgeon said if I had left it any longer I would needed part of my bowl removed. I did have an MRI scan but these lesions didn’t show on the MRI.

Never give up on your health. From my experience I’d say the only way to have 100 certainty is to have the laparoscopy.

Hope you feel better soon

[CitizenErased]

Thanks everyone for your replies. I just hit such a low point that I didn't want to deal with this anymore. I'll try to get the blood test and the MRI. If it does get rejected, I might consider private but to be honest I really don't have the money for that.

I got a copy of the letter the consultant sent back to my GP today. It's absolutely full of misinformation. I can't believe how bad it is. It does have most of the things I told her, but then she has also said that I've tried the coil and the implant but had bad reactions to them (completely untrue, I've never tried either of them and don't ever want to) and she has said I had a laparoscopy last year – also a lie!! I've not had most of the treatment that she is claiming I've had. I don't understand why she's lying to my GP! They have my records! They can see what I've had! Honestly it's just making me feel worse. This woman was supposed to be the specialist and now she's telling my GP a load of stuff that just isn't true!