Start of the journey

[KatyLB]

Hi,

I have been suffering with severe pelvic and back pain for 18 months. After many frustrating doctors appointments (one Gp even telling me "why are you trying to put a label on this?' , a Gp finally referred me for a scan.

I have a history of dermoid cysts and recent abnormal cervical cells so am not usually fazed by my lady parts causing problems

I had a transvaginal scan yesterday and was told that she sees indicators of Endo and an ovarian varicose vein (I didn't know that was a thing). I didn't ask any questions as I was shocked that she mentioned Endo. I hadn't really thought about it as I do not have heavy periods and have had a mirena for many years.( I now know that not all endo patients have heavy periods ).

I am now starting to worry. From looking into endo, the information I found suggests that superficial endo can not be found during ultrasound, so does that mean that mine is deeply infiltrated ? I really wished I had asked more questions!

I now have to wait for a referral to gynae.

Has anyone else been told they have endo at the scan stage? I am quite confused by it all to be honest but happy that some one finally listened to me when I described the pain I am in x

[Whoisthis]

Hello, sorry that you are in pain and have an awful GP, firstly I’d draft a complaint about the comment, it’s the only way they will stop, secondly with scans they use these as a guide only and sometimes they can send you down all kinds of routes and show up odd things but with endometriosis the only way to be diagnosed is with surgery a lap.

If you are NHS I was just going to say at the start of your journey, please fight to be referred to a specialist there are specialist centres dotted around the UK, don’t allow any general gyne to do any surgery. Search for a BSGC specialist go to your GP and “tell” them you want a referral.

And read up on excision surgery (gold standard) vs ablation, laser that the NHS still do.

The more you read online, on Instagram looks for endo warriors get clued up on the condition and then you’ll never have that feeling of not knowing what’s going on with scans etc, I’ve been there many times after appointments not knowing what happened and it’s a awful feeling.

Also if you can take someone to your appointments.

Sending big hugs and hope you get some forward steps xx

[KatyLB in reply to Whoisthis]

Thank you so much for your reply, reading this has already made me feel so much better. I have had a look into specialist and we have an Endo centre at our hospital so I will be asking to be referred to them. I think my GP was planning to refer me back to my Gynae that dealt with the dermoid however he is not on the list of specialists. I guess I have a lot of research to do. I will also be putting in a complaint at the GP surgery, it is awful that so many of have poor experiences and have to live with pain for to long.

I will be pushing for surgery as the contraceptive pill makes me extremely unwell and as I have had a mirena for many years, I would say that contraceptives are not improving my symptoms.

I am so glad that we have the forum and the support of each other, thank you again x

[GoldenGirl2002]

Hello, I’m so sorry that you’ve been suffering and had such bad experience with GPs. I wouldn’t worry straight away, I was told after ultrasound scans that I showed indications of endometriosis and after just having my first laparoscopy it has been found to be superficial, there are lots of reasons that Endo is suggested after a scan. Some advice that I would give is to write down questions that you have before speaking to another doctor/specialist etc, including your symptoms (even ones that seem minor) so that you don’t forget things in the moment of the appointment. There is still a big issue in medicine with lack of awareness about period issues so don’t let the bad attitude of your GP make you think how you feel isn’t valid! Good luck and I hope you find a route to help xx

[KatyLB in reply to GoldenGirl2002]

Thank you so much for your reply. I am starting to write things down ready for my appointment and have now written to the GP to ask for an Endo specialist rather than general gynae.

Now I know that it is a possibility of Endo, I am arming myself with information.

All of your advice is really helpful and much appreciated x

[GoldenGirl2002 in reply to KatyLB]

That’s brilliant! Keep us informed and let me know if you have any questions or worries, good luck xx

[lucikam]

Hi! I would like to ask you mentioned you have pelvic pain and back pain for 18 months. How did the pain started becasue you can very precisely say it is for 18 months. One day after just showed up out of the blue? Or how? The other thing I do not understand why is it so hard to get a referral to a simply ultrasound scan? You have to beg them for many weeks and maybe if you are lucky you get one. Why? I do not even mention to get referral to MRI. That is quite impossible.

[KatyLB in reply to lucikam]

Hi Lucikam , I had mild pain in my back and pelvis for years but just assumed it was normal but around 18 months ago it became so severe I was having to take time off work. I also started developing insomnia and fatigue all of which was around my cycle however over the last few months is now daily. I decided to see the GP because the pain was so severe I could barely stand. Unfortunately I hadn't assumed Endo so hadnt ever mentioned this to the GP. Each time I went , I ended up seeing a different GP which didn't help and despite keeping a diary, not one GP mentioned Endo until my recent appointment. I was told it was my thyroid (I have hashimotos) , another time is was told it might be fibromyalgia , another GP said I was depressed and it was manifesting as pain... I am just thank ful that finally a GP has paid attention.