Tough day

[MrsK1]

Hi everyone,

I'd like to say when it comes to my diagnosis of Endo, I think I've been one of the more fortunate ones. The reason I say that was because I didn't realise there was a problem until the word Endometriosis was mentioned to me at a routine scan.

My husband and I were in the process of beginning IVF due to other fertility issues and before we could start I was told I would need to have a transvaginal scan just to make sure everything was functioning ok. I'd been asked by our consultant whether I suffered heavy periods, I answered no and I was asked whether I suffered painful periods and I answered no. Now when I look back I don't know why I answered no... I don't know whether I just assumed everyone had periods like mine or whether I just answered no in order to smoothly start the IVF process, it was probably a bit of both. Anyway long story short I had a scan assuming everything would be fine and during the scan I was told that there was a problem. I had a large cyst on my left ovary and what appeared to be signs of Endo... I was asked to sit in the waiting room while blood tests were organised. While I waited I frantically researched Endo and soon realised that I had nearly every symptom and that how I felt wasn't "normal".

I had my lap surgery which diagnosed stage 3 Endo, I wasn't surprised however had naively assumed removal of my ovarian cyst would miraculously rid me of my symptoms however I'm still struggling daily with stomach aches, pain and fatigue.

I went to my usual GP today hoping for something to be done about how I'm feeling, his response was that unfortunately these are just symptoms of Endo and that was that... I was a bit shocked at the response from the GP and as I walked out of the doctors surgery I feel like it actually dawned on me. I've been diagnosed with a chronic illness. The GP won't help.

I felt like I had understood my diagnosis when I was first told however I think today is the day I've only really understood what living with Endo really means...

I thought I was a tough person who would just handle this. Today I've realised this is going to be hard.

I'm sorry for the long post, my husband and family are supportive but I just feel like I needed to share with people who truly understand.

Try to keep positive everyone, even on the many tough days. X

[Hidden]

Is there any plan for future treatment?

Did you have your surgery at a BSGE specialist endometriosis centre? There is a list on their website if you're unsure xxx

[MrsK1 in reply to Hidden]

Yes I did, I've got to go back to our consultant in June to discuss how to manage the Endo. X

[Hidden in reply to MrsK1]

It'll be better to speak to your Consultant in June about long term treatment rather than your GP. In my experience the GP will just say to follow the Consultant's advice. Do you have a specialist nurse at the hospital who you could talk to in the meantime? Xx

[MrsK1 in reply to Hidden]

Yes I think I will just seek advice and support online and wait to speak to my consultant in June. I haven't been made aware of any specialist nurses however I might phone the hospital and ask because it is a Women's Hospital and they may have someone I can speak to. X

[lwp75]

So sorry to hear you are going through this. That realisation is a horrid point to hit, i had many times when I started to research this when I was first diagnosed that I would end up in tears not wanting this chronic illness, took me awhile to get my head round it, luckily my doctor has been great and I feel more in control now due to surgery in the future and making changes to diet and using supplements to help ease things a bit. This forum has really helped too, hearing what other people go through and realising that you are not alone or imaging things has been so useful. Hope things go well for you and come on here if you need support or questions answered as everyone is great! Xxx

[MrsK1 in reply to lwp75]

Thank you 💛 Do you have any suggestions for supplements and diet changes to manage stomach aches and bloating? X

[lwp75 in reply to MrsK1]

I have only properly started to try things out for a few weeks so not sure if it will work but am trying the endo diet (eliminating as much diary, gluten, caffine and processed foods as possible) soy is another one to avoid apparently. I have been trying to cut one of these at a time so I can see what impact it has, if I eat any bread I get bad bloating and pain within the hour so really trying to avoid that (but love it so it's hard!) I have been taking evening primrose oil and selenium and am also going to try omega 3 I think as lots of people say it's good. I got a book called Reclaim your life a guide to aid healing of endo by Carolyn Levett (I think you can get a free online download) which I found useful too.