Still no diagnosis and worried about OC. - Endometriosis UK

Endometriosis UK

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Still no diagnosis and worried about OC.

Dreamboat78 profile image


Can anyone help me. I'm so frustrated and need to know if anyone has been through anything similar to me. I have had ongoing pelvic pain in left and right lower sides, had a lap last yr after I had been diagnosed with ovarian cysts on ultrasound with one being hemmoragic and suspected endo. Nothing found during lap by my ob gyn but pain still persisted, then had extreme fatigue, nausia, fainted a couple of times and diagnosed with a vitD defficiency and folic acid defficiency which I am on medication for. Sometimes no appetite, stomach bloated most of the time now and feeling full quite quickly & pass water quite alot. Still in pain which comes & goes, referred to surgeon last yr with suspected hernia but was only very small and surgeon concerned about the pain that still persisted & sent for an MRI scan which showed I had quite a few cysts with one measuring 3.5cm and I needed to be referred to a gyaecologist. He told me the cysts were still there and now I have more. Appointment with my ob gyn again who first had no idea why I was there then after me breifly explaining why I had been reffered he sat and read notes, listened to my symptoms & told me its not gynae related & I need to see a gastroenterologist as it snds like IBS. He dismissed the MRI results as being inaccurate and then insisted I have a vaginal scan done to make sure theres nothing we need to worry about after just telling me 5 minutes earlier it wasnt gynae related. I got home and just cried my eyes out. This was the same ob gyn who missed my cysts last yr. Now I am waiting to have a vaginal scan the beginning of December. Has anyone else been through a similar experience and finally got a diagnosis? I am so worried as it has gone on for far too long now. 😢x

4 Replies

I’m sorry your Ob/Gynae seems to be unable to give you the help you need. He has been inconsistent in his diagnosis from what you explain. Are you able to go somewhere else & get a second opinion, I know it’s so exhausting & the last thing you may feel like doing, but you may find it the answer. I had an Op some 7 years back for a Lipoma, it took 6 consultants before I settled on one who was able to correctly diagnose & perform surgery. Now I have Endo/Fibroids & prolapse- seen one Ob/Gynae but due to her stance on going forward I will be seeking a second opinion.

Good Luck

Hi Whirlygig44,

Thankyou so much for your reply and I'm so sorry to hear all you have been through and are still going through, it must be so upsetting that its come to that and I bet you often wonder if you had an earlier diagnosis it wouldn't have been si bad dnt you ?. I think im gonna wait till my vaginal scan now and if he is still very dismissive with me I will take your advice I think and insist on a second opinion. I am a little worried now though as I have not had a period for about 2 yrs which is normal as I have the mirena inserted but yesterday had really bad period type cramps and now I am lightly bleeding for the first time in 2 years which is a worry. I don't know what to do and wether I should book an app't with my gp. I would reall appreciate any advice you can give me & Thankyou 😊

Hi again, I don’t have any experience of the Mirena coil, but if bleeding is not the norm, I would either see if you can speak with a nurse practitioner at your GP surgery, or perhaps ring the secretary of your consultant for advice. Either way at least your being proactive in trying to find the reason why this is occurring.

Keep me posted

Thankyou so much & I wish you luck with your ongoing problems. Keep me updated and let me know how you get on. Tke care x

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