Struggling to get a diagnosis

[eloisejm]

Hi all! I've recently joined this community after stumbling across it on Endometriosis UK's website when looking for some resources. I was wondering if any of you could offer me some advice as I feel like I've hit a wall in regards to diagnosis.

I have been back and forth to the GP for years discussing my back pain and terrible periods, along with urinary symptoms (urinary frequency) and bowel struggles. Every time I go back they assume I have IBS, intolerances etc. and thus far all I have been offered is bloods to rule out gluten intolerance and I have had an internal ultrasound to check my ovaries etc. Since then, I've had no luck. The NHS are under immense pressure and I feel so bad going back and forth but the symptoms have started to prevent me from enjoying life and at the age of 22 this is really difficult. I understand they always aim to rule every other possible cause out before referring you to gynaecology but this process is taking such time and I just wondered if any of you had any advice regarding dealing with symptoms or even helping this process along a little.

Would any of you recommend going private also? I would love to hear your thoughts and experiences.

[Endolemon]

It has been difficult to get diagnosed. Took 3 years since I started to complain about it in surgery.

First they sent me to check bowel (all clear), after sent for uterus ultrasound. It shows polyps, polyps been removed. Pain still here.

I have Endo in vagina as well ,so consultant in hospital done biopsy and it has shown Endo.

Also you can feel a lamp in my belly by palpation and I have been sent for MRI which shows Endo.

When I asked for hysterectomy, consultant refused and gave me an advice to get pregnant .

Tried HRT. Mirena fell out twice (a lot of pain from Mirena), pills gave me bleeding. So after 2 years in pain, another consultant has agreed I need an operation. So waiting for it now.

I am on lactose free and gluten free diet, no meet, no alcohol. Supplements: magnesium, turmeric. A lot of sleep. Prescribed painkillers.

I would go for private MRI if you can afford it. It might help you to get diagnosed faster.

[eloisejm in reply to Endolemon]

I am so sorry to hear of your struggles and how they have persisted! It sounds as though it has been a tough ongoing journey and I hope you manage to get more support soon.

Do you find the lactose and gluten free helps? I try to do this as much as possible and do find a difference, but it can be difficult to keep up when away/out and about due to lack of options.

Thank you ever so much for the reply - will definitely look into private!!

[Endolemon in reply to eloisejm]

Diet helps, I started it last august.

I had Prostap injections which helped a lot.

Think most important to find a good consultant who understands your suffering.

[eloisejm in reply to Endolemon]

I'm so glad you've found a few things that help you! I can imagine it's a process to find what works and what doesn't. I'm definitely sticking with the diet too!!

Oh - for sure. I think it's so common to feel like you are exaggerating or like your feelings are being truly recognised. I'm hoping I can find the right person to help me through my struggles.

[ccfd9]

Cameron Nezhat is at Atlanta and he has developed an app that asks you questions. If you score 90 or more there is a 95% chance you have endometriosis. That may be worthwhile then you can show the results to your GP and perhaps he/she will let you through the gate and send you to a gynaecologist. It has been shown that on average it takes 5 years to see a gynaecologist and over 9 years to be diagnosed. Disgusting isn’t it.

Have you tried looking at your diet? An anti-inflammatory may help, a gluten free diet may help. You could check out endometriosis.co.uk

[eloisejm in reply to ccfd9]

Thank you!