What do you think of this letter that I will give on my next appointment in August?

[MegVarny]

I understand that I have to live with this condition for pretty much the rest of my life.

I have tried a lot of things to help me feel better as hormonal treatment doesn’t work for me. Whenever I have been on the pill or had the mirena they did not help with my pain and they brought with them depression, anxiety and mood swings. I have learnt that a complete change of diet helps me, and it has taken me many years to figure out what food and drink I can and cannot have. I have discovered that exercise such as running, yoga and swimming help with the pain and I try and workout out 3-5 times a week.

I fully understand that I have to maintain this condition and live with it and that is why I have truly helped myself, but my pain is starting to just get worse.

When I was diagnosed about four years ago by a general gynaecologist, I was told I had a minimum amount of endometriosis on my right side which she lasered off. This did not give me any relief. I then went under another laparoscopy about a year later in which they found no endometriosis. I was so frustrated and after my own research I found this BSGE accredited centre.

After my internal examination with Mr Khazali (which was the most painful one I have ever had) he explained that my pouch of Douglas is tender. I had never even heard of this and after some more research I have discovered that the symptoms of endo on the POD match the symptoms I have.

I completely understand why Mr Khazali recommends trying Zoladex but after my experiences with the pill and the mirena, this is not an option I wish to try.

What I would really like is to have an operation by someone who is actually skilled in operating on women with endometriosis. I know that this will not completely get rid of my endometriosis and that it will grow back but, if I can have some relief and some more answers on where my endometriosis is actually growing, it would mean so much.

I am also turning 26 this October and my husband is turning 30 next year. We are currently saving to buy a house for next spring/summer and have spoken about starting a family. I would like to know what my chances of conception are.

Thank you for taking the time to see me today and to read this letter.

[weekari]

Go for it! It sounds like you're not feeling heard and maybe by giving them this letter you'll be fully listened to. I really hope you are given the chance to be heard.

I just wanted to ask if you've ever had an mri to look at your endo? I've recently been diagnosed by mri through a referral to orthopaedics. The specialist endo Centre has since picked me up and requested another mri that was more focused on the areas of endo. I had a lap 2 years ago and nothing was found. It seems all my endo is behind my reproductive organs (my periods are totally normal) and I suspect they've only looked at the reproductive bits at the lap and thought it was fine.

It might be worthwhile asking for one if you've not had one. This may show up more than what they've seen already and without the need for surgery or a long wait. If, like me, it's affecting the bowel, then you'll be straight to the specialist centre anyway.

I really hope you get someone who listens and this leads to help. Xx

[KEndo16]

Hi, can I ask why you won’t be sending this off ahead of your appointment?

[MegVarny in reply to KEndo16]

I find it easier to just give the doctor everything in writing in case I miss anything. I have shortened the letter to bullet points so it’s easier to digest.

[Hidden in reply to MegVarny]

Personally I would give them the version of the letter you’ve posted here. It’s concise and gets your points across.

I wouldn’t totally rule out trying zoladex/Prostap while waiting for your surgery. It works in a very different way to the other hormonal treatments. Like you I couldn’t cope with the side effects of hormonal treatments but I did very well on Prostap while waiting for surgeries xxx

[KEndo16 in reply to MegVarny]

I think you’ve written a great letter- your requests will have more impact if you post the letter ahead of your appointment. That’s what I do. I would also take the letter in to the appointment and use it as your agenda.

[Harpyiai]

Mr Khazali? If it is the same Doctor, I have him and that is all he suggests to me is Zoladex (which for good reasons, I am worried about as I am only 20!) But he is specially trained in Endometriosis. Putting all your concerns forward is a good idea! I do it all the time, and it allows me to have a clear mind of whats next.

[Jujuhawk]

Hi Meg

It’s great to hear how determined and focused you are! Unfortunately that’s how we have to be-proactive not reactive. I like you had normal periods and when I eventually was given a lap after many years, I was told my pelvis is completely obliterated as was my POD and they said I had some Fitz-Hugh Curtis syndrome. I managed my condition by diet and exercise. You mentioned that you did that and it helps but you stil have pain! I cut out dairy, alcohol, red meat, caffeine and processed foods. It wasn’t easy but my pain stopped after 6 months. I eventually found an amazing endo specialist at Arrow Park woman’s hospital - Mr David Rowlands. He is quite an eminent surgeon. I live in Wales so had to travel to see him privately first. Maybe you could contact him to see if he could recommend a surgeon for you- just a thought. Zolodex didn’t work for me, made me feel achey, stiff and depressed. I had my family before I discovered I had endo lurking around. Keep pushing forward, you’ll get there. Good luck xx

[MegVarny in reply to Jujuhawk]

My periods unfortunately aren’t normal and never have been! Yes, I am on a gluten free, vegan diet - although this helps with bloating and food related flares up, it doesn’t help with my daily endo pain! Thanks x