NHS and Endometriosis both caused me lots of pain and complications

[Bubble-z]

I’ve had many horrible symptoms for years including blood in my stool and infertility but my GPs and NHS Gynaecologists couldn’t find out that I’ve had Endometriosis. I was even told I may have bowel cancer as there was blood in my stool, so, my GP asked me to do a colonoscopy but Colonoscopy results came back as normal as Colonoscopy can’t detect Endometriosis. I’ve also had infertility issues for years but NHS Drs told me that nothing was wrong with me so we started IVF in a private clinic which costs us thousands of pounds!!!! During IVF scans and examinations I was told that I had a fibroid which may affect the cavity and it could cause a miscarriage so we decided to freeze our embryos and put hold on embryo transfer. I went to my country for Christmas and did a MRI there, considering the MRI results my doctor diagnosed me with Stage 4 Endrometriosis and told me I have to do a Hysterectomy and remove some part of my bowel and rectum as they’ve been affected by Endometriosis badly. It’s so sad that we pay lots of tax that some of it goes to NHS but can’t get a good healthcare! The first time I contacted my GP due to my symptoms was many years ago (2018) but unfortunately they didn’t do their jobs properly that’s why I have all these issues and complications today!!! I’m furious, depressed, heartbroken and hopeless and in lots of pain. And our little embryos can never turn into cute babies.

[RosieFalkor]

It’s also taken me a long time to be diagnosed, but this is not an NHS problem. It takes an average of 7.5 years to be diagnosed in the UK apparently and up to 10 years in the US.

I have the same diagnosis as you (severe with fibroids and needing hysterectomy) but I've already had children. I'm so sorry that it has worked out this way for you. It's a horrible diagnosis and to not be able to have the children you've longed for must be heartbreaking.

[Bubble-z in reply to RosieFalkor]

It’s definitely NHS problem as your health care system is not working my dear! Read the News, then you’ll see many people are dying in this country due to late diagnosis or lack of care! I know you are proud of NHS but I’m afraid you haven’t see any better that’s why you are so proud of it!

[RosieFalkor in reply to Bubble-z]

My dear, I know the NHS only too well. My daughter has complex heart disease. She's had 4 open heart surgeries and nearly died of Endocarditis. The NHS have been amazing and saved her life several times.

[Bubble-z in reply to RosieFalkor]

Good for your daughter, I can’t have a baby, I have to do hysterectomy, I have to remove my rectum and parts of my bowel because of a very late diagnosis! I didn’t even get diagnosed in the UK as it’s impossible . Not everyone is as lucky as your daughter so just because NHS saved your daughter doesn’t mean it’s a good system!!!

[Sunset-lady]

Hi my endometriosis sounds similar to yours. It's very hard to accept. The thing is that it will have been like this for a long time not just since 2018. If you had bad periods growing up the adhesions will have started back in your 20s. That's why they can't see them as they are older and well established like mine. I'm 50 and on zoladex. They tried to do a hysterectomy but I'm too fused. I'm angry too as I was dismissed again and again , but we cannot blame the NHS. It's a difficult disease that they still know very little about. 1 in 10 women get this yet the research and funding seems ridiculous. That's the same ratio as diabetes by the way. I'm sorry this has happened and sending love.

[Bubble-z in reply to Sunset-lady]

Yes, I am aware that andrometriosis develops at very early age but my symptoms got very bad since 2918 and despite passing blood, heavy periods, constant constipation, infertility and … they didn’t request an MRI or anything else for me. Only in 2923 they did a virginal scan and a colonoscopy that didn’t detect endometriosis. Of course I can blame NHS because I’m paying 50% tax and haven’t received a proper care. Of course I can blame NHs because I had a miscarriage 2 years ago and had to sit in their bloody emergency unit for 6 hours to be seen by an idiot. You have no right to educate me on who to blame!

[Sunset-lady]

I'm sorry this has happened to you. Perhaps put in a complaint through formal channels. I hope you find peace.

[Cocoacupid]

hi I was diagnosed late my more severe symptoms started around 2019 2020 I had blood in poo I had to have a colonoscopy everything normal apart from severe symptoms . I am afraid that as others have said. It does take a long time to get an actual diagnosis and that’s only if you have severe symptoms some people may not even know they have endo unless trying to conceive . I was told by gynecologist that some people with severe endo may not even have any pain while some with very little endo do but this is not textbook really as I have had severe issues for the last few years . In my early 20 s my periods got even more severe but was just told a cyst as it didn’t go away saw gynea an older man and he said my internal organs felt fine little did he know that now in my late thirties have to have bowel reconstruction and probably a hysterectomy. Like you I don’t have children. But that now is the least the of my worries. I just want to have some decent form of living my life instead of just existing in pain. As others have said to you the nhs is good but it is on the brink of going to privatisation as it can’t sustain its staff anymore and operations actually cost the nhs lots of money. I in the least bit do not blame the nhs I blame our government . I have a Spanish friend and herhealth system is brilliant as she sees a gynea person once a year but in England it is like gold dust. But as others have said to you if you do have complaints then you can complain to pals and they will help you with the issue. I have worked for the nhs before but I do know it is not the same as it was before. Some of the issues is that people are living longer now and they just don’t have the beds in hospitals now. Quite often though they will get agencies to cover shifts they did that whilst I worked for them many years ago.