Newly diagnosed, I am new here - I have questions, would appreciate some advice

Hi there

My name is Jenny. My husband and I I have had 'unexplained infertility' for four years. Two weeks ago we went to a specialist to start the consultancy for IVF treatment. We have gone private as because my hubby has a child (my lovely stepson) we still need to pay. But, after a discussion about symptoms it was evident to him that it could likely be endometriosis and wanted to complete a scan which happened yesterday. The specialist did an internal vaginal scan and he found that I have ovarian cysts of 5 cm in both ovaries, with endometriosis and what could be either a bicornuate uterus or growths of endometrial tissue. This is what he could see. I probably didnt ask the questions I should have as I was just taking it all in!

As someone who has a diagnosis of ME and fibromylagia, I have always been keen to be proactive about managing my symptoms and I want to do the same here. I am full time carer for my sister with learning disabilities and I work full time. More recently i have struggled to manage work and caring role and have had to take a step back from work.Any suggestions on managing symptoms until I can get a laparoscopy would be most welcome as I need to continue work.

Due to the debilitating pain that I have had, painful heavy bleeds, bleeding throughout the cycle, stabbing pains, pain urinating, twisting pain below the belly button, pain during bowel movements, I want to try and resolve this as much as possible before IVF (especially if natural conception could be more possible?) I think it may have spread to other areas. Will this be determined in the laparoscopy? I understand this would take two different laparoscopy approaches so may need a second surgeon there? So does that mean the first one will determine where it is and if I need more surgery or is it worth trying to ascertain this beforehand?

I am potentially having to wait 3 months on a waiting list on NHS for the laparoscopy so I really am open to any suggestions that will help manage symptoms in meantime. (we have money saved but that needs to be for IVF treatment so has to be on NHS).

My specialist is going to write to GP so I will see her and ensure she makes the recommendation as soon as possible and get it passed through, I really just want to understand how they will determine the extent of the endo and whether it will take more than one surgery if they do?

Thank you so much for reading and listening. I was so pleased and relieved to get a diagnosis after constant disappointments, early miscarriages etc. But this quickly became feelings of anger upset and frustration and confusion.I thought I just wanted answers. I now have those and yet it has opened a whole other can of worms of questions.

Any help/advice would be gratefully received.

Jen

5 Replies

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  • Hello Jenny welcome to Forum, there are alternative therapies for ME/Fibro it depends on your mobility? You seem to have a busy life and some demands on you although suffering yourself.. I use a hydrotherapy pool each week (warm water not for swimming but for gentle exercise with a specialist physio) and when I cannot get to hydro I use the local pool and just sit in the Jacuzzi and soak in the bubbles! your tummy pains will benefit from the support the water brings too. I couldn,t imagine any gynae doc advising not to try hydro.. Good Luck keep inotuch with us and let us know your progress. with best wishes from Nurse Gladys Emanuel (open all hours )-just my pet name on the Forum!!

  • Thank you very much for coming back to me. When I was first diagnosed with ME/Fibro I did hydrotherapy then. It did help. I manage those symptoms very well now, but of course with the endo symptoms and them progressively becoming more painful, I am mindful of trying to get enough rest but not to trigger having a relapse of ME but my life is a little on the chaotic side and doesn't always allow for that!

    In all seriousness though I do need to help myself with this and I want to take control of the symptoms and this is a great idea to revisit hydro. Thank you very much

  • Hi jen - are you in the UK and if so are you being seen at a BSGE accredited endo centre.

  • Hi yes in the UK. We have gone through HFEA accredited clinics for IVF at the priory in Birmingham and met with a specialist who picked the issue up straight away but was only confirmed as endometrial cysts yesterday when he scanned me

    Jen

  • Hi,

    I'm new to all this myself with only just being diagnosed. I've recently had laparoscopy and was told they had removed the cysts, some of the endo and flushed my pelvis. Unfortunately they said it was so severe on my bowels they couldn't touch it and would have to be done by a specialist.

    Me and my partner were also trying for a child but as a last resort I've had to go bk on the pill.. But they did also say pregnancy would help , I just couldn't bare the pain anymore and need to get a job.

    All cases are totally different and you maybe lucky enough to have it removed with the cysts, a lot of people have had great results from surgery.

    Good luck with everything, your story as actually inspired me with all you have to cope with x

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