endometriosos, adenomyosis, pcos

[nightsky2]

I started my periods when I was 13 years old. I have suffered with painful periods for as long as I remember. I started to realise there was a problem when I was in pain throughout the whole of my cycle not just when I was on my period. This would cause me to cry and be in a lot of pain, but also bleed a lot and very irregularly ranging from 21-40 days, faint and feel like vomiting every day. I went to the doctors to try a combined contraceptive pill to regulate my periods and to try to stop some of the pain, however every pill I tried made me dizzy, depressed, angry, have migraines or cause a lot of side effects plus the normal pain I would feel of my periods. After this I decided that the pill wasn’t working and requested to have the implant, however, the waiting list was so long I never ended up getting it. After a while of suffering I started to take regular paracetamol and ibuprofen for the pain and constantly lived with a hot water bottle, which I found were the only things that helped.

I was still visiting the doctors to see what I can do and what was wrong as I was sure something wasn’t right. I was having blood tests which came back normal apart from having an iron deficiency and I didn’t understand what the problem could be. I started to get severe abdominal pain and mild chest pain and the doctors gave me Gaviscon for indigestion and said I could potentially have glandular fever. The pain after started to get so severe I woke up in the evenings in incredible pain after taking co-codamol and a hot water bottle to bed. I woke up one evening in so much pain and went downstairs to tell my parents. Before I could speak I fainted and remember being taken into hospital where I got given more paracetamol and ibuprofen to take home with me being told again that everything was fine. I gave up hope and started to think it was all in my head.

In the last year i have had 2 MRI's which have stated I have endo, adeno, and PCOS, however, after this result I have seen a specialist doctor who doesn't believe I have these and doesn't want to do the surgery to make sure because 'it wont help'. I have been on dienogest for just over a month and have been told after 3 months of taking this pill that all of my problems will go away like nothing was ever wrong with me. I know there is something wrong and I've been on 10 different pills over the last 6 years, which have caused me to become depressed, stressed, have different gastro problems, and started to experience a lot more pain than ever. I'm starting to lose hope and starting to think this is all in my head. I have been taken to hospital emergency twice and all the results have come back fine. I just don't believe how this pill can cure me when 'there is no cure for endometriosis'. I'm just 21 years old and find it very painful to have sex, I'm in pain every day, can't wear anything too tight around my stomach, can't digest any food, need to wee urgently after having a drink, constantly exhausted, have lost 10kg in 3 months and I always feel sick.

Has anybody had an experience like this and has any advice please?

[Cailleach]

I am afraid I don’t know what the health system is like in France for dealing with these kind of issues. I also don’t know much about PCOS.

Having said that you seem to have been treated very poorly and your actual experience of symptoms ignored. That happens here too! There are I think European guidelines for the treatment of endometriosis, it would be worth googling those and discussing them with your doctors.

Given your current situation, with symptoms that are severely affecting your quality of life, could you go back to your family doctor, perhaps with your parents’ support, and ask for a referral to another gynae specialist, ideally with expertise in endometriosis? It is not true that surgery is only to diagnose as you were told, the surgeon should be able to remove endometriosis as far as possible. It is important to ensure they are specialist in this area though,

Your own family doctor could also help with your digestive problems, by referring you to a relevant specialist if that is what you want, but by prescribing symptom relief such as anti-sickness medication, something for stomach/ bowel cramping if you have that. They should also have a range of painkillers which they can prescribe.

If after pursuing this you are not getting access to effective treatment, then you should pursue a complaint about the medical service you are being offered.

I do hope you find some improvement xx

[nightsky2 in reply to Cailleach]

Hi Cailleach!

Thank you so much! I will 100% look at the guidelines. I’ve only been in France for a year and a half so everything’s gone very quickly until now but it’s almost like I’m stuck with all of these new problems and information and now no medical service wants to help. Ive tried laxatives because I was extremely constipated but now I eat and I’m on the toilet 10 minutes later so I’d really like them to do the surgery and find out what’s causing all of this! It’s been 3 days since I’ve emailed a doctor in England that members of my family have used so hopefully I hear back from them soon! Because they are specialists from a hospital though I have a feeling it could be a while xx

[Cailleach]

Following on from my reply, ESHRE guideline Endometriosis 2022 is what you need to Google.