Waiting to finally be diagnosed - what should I ask the gynae?

[Smee22]

Hi Everyone,

Last week I finally got a referral from a GP (Not my usual one) to see a gynaecologist as she believes I have endometriosis after describing that I have been bleeding for over 3 weeks now and have a range of pain in my right groin area (ranging from intense stabbing to constant aching to feeling very uncomfortable & like I have a golf ball stuck in there).This is something I have suspected since the start of the year but with each visit I have been told it was probably just another cyst, for which I could 'have a scan if I wanted' (I've had a couple on my right ovary over the past few years). My last scan for one in January showed no cyst, even though I was still in considerable pain for about 3 weeks. I feel so relieved that someone has finally listened to me and not just presumed that my pain is due to a cyst or my pill!

I have been having pain and irregular bleeding for about 8 years now though my various doctors have just swapped me around on various pills until the cysts appeared and no further thinking/diagnosis seemed necessary. It has been getting increasingly worse over this time, particularly in the last couple of years (since the cysts) with the pain lasting for weeks at varying intensities, pain during/after sex (which has been particularly testing for my husband and I), massive hot flushes and such erratic bleeding that I don't know if I'm coming or going at the moment. It has had a massive impact on my personal life but also more recently over my working life when an 'attack' of pain or bleeding hits me at work (I was a teacher, so not very convenient in the middle of a lesson!). My skin has also become acne prone over the last 2 years which may or may not be related as I thought is may be due to a dairy allergy but perhaps it could be a bit linked to this too? It does seem at times like I rarely have a day when I feel normal and healthy.

I'm about to book my consultant appointment and was wondering if you have any advice/tips/questions I should ask when I go? I'm going to bring my husband with me as I'm not great at remembering to ask things, rather I get overwhelmed with the information but I have been keeping a log of everything since this last bout of pain/bleeding started to help prove my case. My main concern is what damage it might have done to my fertility, we are looking to have children in the near future & I will be utterly devastated if this condition has hurt our chances of it, especially as it has potentially been in me for so long...

Hope you are all well and thanks for taking the time to read this; it is nice to have people who understand!

xoxo

[Bokkie]

Hi Smee22. You have really been through it haven't you! When your cysts were diagnosed by a scan, were you told they were only small and 'that all women have them' ? That is true but some months you can get them worse and they do 'POP' unfortunately which is incredibly painful. From my experience, I think you should ask your consultant for a diagnostic laparoscopy as that is the only way they can get a proper look at what is going on in there. Alternatively, a CA125 blood test can show if you have inflammation inside that could be caused by Endo. Having Endo doesn't necessarily mean fertility problems; I was told that I have had it probably for all my adult life but was I only diagnosed via a laparoscopy with stage 4 Endo earlier this year at the age of 47 and I have THREE children!!! I have always had heavy period problems since they started at 14! During my laparoscopy I was found to have a blood filled cyst so badly stuck that it had to be left there. I am now on 12 week injections of Depo-Provera to keep my Endo under control and which also hopefully will stop other blood filled cysts developing too. No periods at the moment (yay!). Will keep my fingers crossed for you that you get a real diagnosis and the right treatment that will give you your life back. Take care! XXXX