Notes from Telephone Conversation - Friday 7th January 2022
My Endometriosis Specialist Miss D Ghosh has just had a baby and is on maternity leave for the next 9 months.
Spoke to Endometriosis Specialist Dr Natalie Brice. She said she was on her own while speaking to us. Me and Stuart was there on speaker phone.
Pains not getting any better. Still bed ridden. Still using crutches around the house and when I am out and about. Please look at my diary or ask for more information.
Stuart told her about my website www.nomoreendo.com, which has got all my information on and my pain diary. Dr Brice mentioned that she is not allowed to look at my website, so we promised to send her all the latest information on my current situation.
Dr Brice mentioned the next step was pain medication but both me and Stuart said that is not an option for me at all as all the pain medication I have had in the past did me no good and I had really bad side effects to them. The only pain medication that has really helped me is Tramadol. I would like to try Oramorph as my sister is on this but I was refused it by my GP.
Dr Brice mentioned about an injection called Zoladex, which stops my ovaries from working all together and stops hormone production and helps with the pain of the Endometriosis. She said that if the pain I am suffering with is caused by my Endometriosis then this injection will stop it completely if not then the pain is not caused by Endometriosis. She explained how this injection has had 90-100% success rate with other patients. Dr Brice mentioned that I have the injection once a month for 3 months and it needs to be administered by my GP. Dr Brice also said that if the injection works then they might do a hysterectomy which is what I have been asking for from day 1.
I mentioned that since day 1 I wanted to have a Hysterectomy but Dr Brice was not inclined to do that has it might not solve the problem. Dr Brice mentioned that there was no notes on my file mentioning me asking for a Hysterectomy. There are 2 reason’s why I am asking for a Hysterectomy 1) because I have heard so many women saying that they have had the Hysterectomy and it helped a lot with the pain, some of them have even said that they go back to their normal life pain free. 2) I recently found out that my sister (4 years old than me) who also suffer with Endometriosis is going to be having a Hysterectomy within the next 3-4 months. She was offered the Hysterectomy as soon as they found out she had Endometriosis but she declined it because she wanted to have another baby. Now that she got a baby she is now having the Hysterectomy. Every time I have asked for the Hysterectomy, from day 1 I have always been told no and that I am too young to have it. I want to have the Hysterectomy because I do believe that it will be the best thing for me and it will definitely help with the pain.
I said I will need to do some research on the injection and look into it more before making up mind on whether to have it or not. If I decide to have the injection I would start getting it within 2 weeks.
Dr Brice mentioned that she was looking at photos on the computer while speaking to us on the phone and that everything looks normal apart from the Endometriosis.
Stuart asked if there could be anything else that could be causing my pains in my right side abdomen as all of the Endometriosis was found in my left side and in the middle of my abdomen. Dr Brice mentioned muscle pains. Stuart mentioned about hyenas and incisions.
Dr Brice mentioned about seeing a chronic pain specialist or a physiotherapist.
I asked about other scans that can been done to see if there is anything else going on, rule out other things and for my own peace of mind. Dr Brice mentioned that they could do an MRI Scan, which scans the whole body.
Stuart asked about seeing Dr Brice face to face and she said properly within the next 3-4 months would be best and it would be best to see her after I had the injections. We both agree to this decision.
Dr Brice said if I needed to get in touch with her, to email her through Miss D Ghosh’s secretary Stephanie Lloyd. I need to let her know what my decision is on the injection when I have made it and to send all of the paperwork.
Stuart asked her to send us notes on what we discussed on the call and she agreed to do so.