Getting a Diagnosis?

[Nell97]

Hi everyone, just found this forum and I'm looking for some encouragement/advice. I have a family history of endometriosis and a set of 'classic' symptoms (irregular periods even on the pill, very heavy flow with clots, extreme cramps and fatigue, horrific back pain, pain in and difficulty moving legs, irritable bowel symptoms etc.) so I feel that I am in the right place here.

I have been seeing doctors about this for 7 years now and it has been a soul destroying experience. When I haven't been completely dismissed, I am told that my symptoms are unrelated or it is suggested that I just 'take some ibuprofen'. I am currently on the combined pill as I found the mini-pill had a hugely negative impact on my mental health. I don't feel like this is working for me; I am bleeding heavily for around 2 weeks each month and my symptoms are very difficult to manage. I am currently at university so I feel that I need to do something before I start full time work and live alone.

Does anyone have any advice on how to get a diagnosis? I feel like it would be confirmation that I am not just being "hysterical as well as reassuring me that there isn't something else causing my symptoms.

[Elmo1986]

Hi,

I am so sorry to hear you are going through this it can be a nightmare trying to get diagnosed. Have they done any tests to try and rule other things out? Ultrasound, MRI etc? I eventually got diagnosed after I got fed up and changed doctors to someone who understood and got the ball rolling. Where abouts in the country do you live? Do you know anyone who could recommend a good doctor?

[Nell97 in reply to Elmo1986]

Thank you! I've had a couple of ultrasounds and blood tests which were all clear and no one has followed up on the results with any other suggestions. My current GP is in Newcastle and I've been recommended a doctor there by a nurse friend to ask for when I make my next appointment.

[Elmo1986 in reply to Nell97]

Yes I would definitely try a different doctor. I found that some of them were just so stuck in their ways and fobbed me off so many times with 'period pain'. It wasn't until I found my current doctor who pushed me straight through for tests (I hadn't even been offered an ultrasound previously) that things started to move forward. Sorry I can't be anymore help though

[Nell97 in reply to Elmo1986]

Exactly it's so frustrating! I'm glad you've got a good doctor now just wish there were more out there who are willing to do that. No that's great thank you! It's always helpful to hear from people who have been through something similar. I know there's never going to be a magic fix but it always helps to have a bit of encouragement

[Elmo1986 in reply to Nell97]

Well I hope you get sorted soon! You are always welcome to drop me a message if you ever need anything. I have been through all sorts in recent years!

[Nell97 in reply to Elmo1986]

Thank you!!

[Elselih in reply to Nell97]

Hi Nell, I'm in Newcastle too and after years of being back and forwards to hospital I finally requested a referral to the BSGE endometriosis specialists at the RVI. The consultants name is Tony Chalhoub. Lovely man. Just had my 1st laparoscopy two weeks ago after 12 years of being referred to different gynaecologists. Removed endo and separated my ovary and bowel which has fused together. I would absolutely recommend getting a referral to him.

Good luck x

[Nell97 in reply to Elselih]

That's great thank you so much!! I

[pinktiger33 in reply to Elselih]

Hi, hope you don't mind me messaging, I'm just looking to hear about people's experiences with the gynaecology department at the RVI. I am waiting for my first appointment and just want to know if there's anything I need to be aware of or anyone in particular I should ask to speak to? Any information or advice would be great as I'm feeling a bit clueless at the minute!

[Elselih in reply to pinktiger33]

What clinic does it say you are going to on your letter? My experience with Mr Chalhoub was great, the previous years under different consultants was not as successful. They tried lots of different hormonal interventions which did not work and I maybe should have gone back quicker after each time. Only when the pain and bleeding got really bad did I go back again. Cerazette helped with the pain but not the bleeding. Only once i had the laparoscopy did the bleeding stop. Its been 18 months and I'm still on cerazette and haven't had a period in a year. After bleeding almost continuously for 10 years it's a relief.

All the consultants and nurses there are very kind and listen to what you have to say. It was the treatments that didn't work for me.

[pinktiger33 in reply to Elselih]

It just says 'gynaecology - general gynaecology'. Doesn't have a name of a specific doctor/consultant or anything so I'm not sure who I'll be seeing. I'm just hoping they'll already know what I've been through and go from there rather than starting from square one again! How long did it take for you to get the laparoscopy? And what did they try before doing that if you don't mind me asking?

It's really reassuring to hear the consultants and nurses have been kind and listen as I've heard lots of people from other areas saying they've just been passed around and not listened to properly. Thanks so much for getting back to me.

[Hidden]

Could you afford to pay to have a scan privately? I paid £100 for a scan with Ultrasound direct and although that didn't conclusively diagnose my endo it showed enough areas for concern for my GP to refer me to the hospital under the 2 week urgent referral system. xxx

[Nell97 in reply to Hidden]

Thanks but I definitely can't- I'm a student at the moment. Definitely will be something worth thinking about saving for in a few years if I've got no further.

[Cats1234]

It's so frustrating not being listened to isn't it. Your symptoms sound horrible I'm so sorry no one is taking you seriously. In the end I changed doctors twice to end up seeing someone lovely and understanding. Hope this helps

[Nell97 in reply to Cats1234]

Thank you! It's so lovely just to hear from people who understand

[Daisychain222]

You poor girl. Please know that you are not alone.

Seeing a gynaecologist is very important to getting a proper diagnosis and testing. I suffered for years with multiple surgeries but had an amazing OBGYN who was very supportive.

Ultra sounds seldom show much...., I have had many and very few revealed the emmense problems caused by the endometriosis, adhesions and blood filled cysts. Many times my uterus and bladder were pulled down and stuck to my bowl.

Your bleeding is a concern as are all your symptoms. Please get in to a specialist or go to emergency the next time you have pain and bleeding....... At least you will see a Gynaecologist sooner.

Sending you Blessings 💕

[Nell97 in reply to Daisychain222]

Thank you!!

[pinktiger33]

Hi, hope you don't mind me replying so far after you posted, but I was particularly searching for stories of people who live in Newcastle. Did you manage to get any further with seeing any gynaecologists or anything? Hope things have moved forward for you in some way!

[Nell97 in reply to pinktiger33]

Of course not, it was actually a nice reminder of the encouragement you can get on here which I really needed right now. I haven't managed to get any further in the last year, the most recent suggestion of a doctor was that I lose weight otherwise they will take me off the pill. I never managed to even get a referral. I will be booking another appointment again soon though because my symptoms have been getting worse. I saw above that you're waiting for your first appointment so I really hope that goes well for you!

[pinktiger33 in reply to Nell97]

That’s so sad to hear, and so sad to see that so many of us seem to just he ignored! I ended up crying to the doctors when they told me they weren’t sure if there was anything else they could do as I was just so frustrated and I think strangely that got the message across as she took me a bit more seriously after that and referred me to a gynaecologist!

Really hope you manage to get some help very soon!