Endometriosis UK response to the recent news about a blood test for endometriosis

[Lynne_support]

In response to new research announced today on the diagnosis of endometriosis via blood tests, Emma Cox, CEO of Endometriosis UK commented:

“Endometriosis UK welcomes new research into endometriosis which is a much under researched area. Diagnosis time averages an alarming 7.5 years and can have a hugely detrimental impact on women’s health and wellbeing; new research is critical to driving diagnosis time down.

Whilst the research released today is an interesting study, it is a trial with a small sample size, and a much bigger study covering a diverse range of demographics would be needed to validate the findings.

Although a non-surgical test for endometriosis is urgently needed, we should not offer false hopes to women who may have already suffered for many years.

Women deserve an accurate and readily available test free via the NHS, when a test is developed. Women with the disease already face a financial burden due to loss of earnings and it's not fair to add to this by only offering pioneering treatment and diagnosis options to those who can afford to pay for it”.

[Amelie8]

this would be great if there was a blood test. my doc said it takes 8 years to diagnosis, and basically said i have endo, but it will take about 3 years until will be found. soooo stupid.

[LISaprag in reply to Amelie8]

What Symptoms u have

[Amelie8 in reply to LISaprag]

Hi,

I get pain most of the time, cramps, hurts alot to wee and pass a stool.

Painful periods, big clots, painful sex, bloated belly and waves of nausea . When it's at its worst which is about 2 days of the month, I can just about walk.. Had issues since I was 11. I am now 27. I've has 3 laparoscopies since I was 16, I've had my right tube removed when I was 16, as it was "distorted". Then 24 they were Worried something had happened to my ovary so they went in again "emergency op" but it was my appendix, then again in last November but i had alot of adhesions on my bowels etc etc.

[LISaprag in reply to Amelie8]

Sorry to hear u been through all that I’ve not even been diagnosed yet I get light periods but painful ones I don’t know if I could have it or not I don’t wanna go through a op scared to be put to sleep unless I really needed it I was on the pill which helped with the pain but I not been taking it on time so I’m bleeding which seems like a period but very light but pain is bad

[jinka]

In this day and age I am disgusted that Endo is still so prevalent and still so under diagnosed. Why does it take so long to diagnose? I remember sitting in a gyne hospital waiting room reading a sign about Endometriosis I had every single symptom. No one even mentioned Endo to me. I was 21 at this time.

My symptoms started at age 13 and every doctor I went to said my symptoms were normal I was 21 by the time I had my first Laparoscopy and I had Endo at that point but they didn’t spot it because it was new and it was in my bowel as well as everywhere else.

I remember my first lap because it was so traumatic... I was told I shouldn’t be there and I was wasting operation slots before I even went under. When I woke up I was just told to take six weeks off work and that the hospital would send for me with results. Several months later I was called back and I was told I was Diseased...that was the term that was used...Diseased! After lots of tears and my husband thinking I had an STD ( Diseased) the consultant went on to say an abnormality and that I would not be able to have a child without help. Endo was not diagnosed at this point.

I was 21 and devastated as my key catchment area and age for IVF was 27. And even then the waiting list was 3 years. I found out after it was a lottery postcode as to ages and how many try’s you got on the NHS.

My husband and I moved from Essex to Wales in 2004 when I was due to go onto the waiting list for IVF. I paid (a lot) to have my hospital records transferred to my GP surgery in Wales. I went through ridiculous and intrusive tests as I still wasn’t diagnosed and at that point they were still looking for an STD that I simply did not have! Once I was deemed to be clean I was send to Cardiff where after one Lap I was diagnosed with Endo. The consultant there said I had the most difficult case he had ever seen.

I was diagnosed when I was 32 after a lifetime of showing clear symptoms but being told it was always something else. When I and he were being investigated for STDs it obviously put a massive strain on our marriage! And no STD was present just clear signs of Endo.

It was awful and I will never forget nor forgive the way I was treated until the one consultant diagnosed me.

I went through ICS and I still wasn’t able to have a baby, we have made our peace with this now. I’m 42 now and the only way I could get out of the daily pain that is Endo was to have a Hysterectomy.

It’s disgusting that after all these years it still takes so long. Please let me know if I can help in anyway

Many thanks

Justine

[Hidden in reply to jinka]

Wow, what an awful experience for you 😞so sorry you were treated like that xx

[ourmolly in reply to jinka]

I like you have suffered for many years. I had never heard of endometriosis. It was my GP who told me he thought I had it. I suffered with heavy periods with clots from day 1. I was lucky enough to have 2 children young. But my periods got worse afterwards. I had hysterectomy at: 28, but my ovaries were left. Plus my Cervix was removed as my bleeding was so bad I could not have another period. My abdomen was full of endo. Hence, I also had rectal bleeding with clots, which I still have at age: 64. I also have a Rectal ulcer. My stomach is full of Polyps. Hence, I have digestive issues. Along with all this, I had a Spinal Cord Stimulator fitted 5 years ago due to severe back pain. I wanted to have a Colostomy bag, but I could not have a bowel operation because the lining of my bowel is very thin, and I could bleed to death having the operation.

All I can say is that anyone that is suffering from severe endometriosis needs to stress their issues to their Consultant and GP. Don't suffer in silence.

[Vejunka]

Something needs to be done. Already my first period was really painfull but as everyone I was told is normal. At age of 15 I started to take contraception, which helped with pain.

When I was 25 I started to feel pain even I was on the pill when I asked my doctor he just said continue to take the pill without break, so I did. When I was 29 I decided to stop with contraception as I would like to have kids one day and I felt like it is not good for my body to continue to take so many hormones. The period pain quickly increased and sadly also affected my kidneys. 2 years doctor thought that I have kidney stone stuck in my ureter. I went for surgery and was told after they didn't find any stone. Because I ended up in hospital with my urine stuck in my kidney 3 years ago, doctors decided to keep and exchanging my stent between kidney and bladder just to make sure this won't happen again. Only this year I finished in hospital 3 times with infection caused by stent and went 4 times under General anestetics to have exchange the stent. My left kidney works only on 12% and doctors thinking about removing it. All of these suffer only because endo. I probably have it on my left ovarie and the cyst is pressuring on my ureter and causing this problems. I am waiting for my fist laparoscopy to find out where everywhere my endo is. Doctors already told me that they are not going to treat the pain and they will go first with safe option to try remove as much as they can without cutting to my other organs. I am reading everywhere that I should choose doctor who has enough experience to be able to recognise the endo, but I don't have a choice I just need to go with what is available and hope for some good result. It is horrible feeling when no one believe you that you are in pain and everyone just says it is in your head. I almost started to believe them. Something really needs to change!!!!