Has your life been dramatically altered by endometriosis?

[EndoUK_Comms]

We have been contacted by a freelance journalist who is hoping to write an article about endometriosis for a national newspaper.

The journalist wants to write an article which really makes people sit up and think, so would like to speak to women who are dealing with the consequences of Endometriosis.

Ideally, the journalist would like to speak to someone who has faced lengthy delays in getting the right treatment and who's work and personal life has dramatically suffered as a result.

If you are willing to have your photo taken and for your story to feature in a national newspaper, please fill out our online media form using the following link: endometriosis-uk.org/share-...

The journalist is working to a tight deadline, so be sure to submit your story as soon as possible.

All the best,

Endo UK

[Immunewolf21]

My life has gone completely upside down! In 2010 I was a successful A&E sister yes I'd battled through health problems but was doing it. Today I am still in agony awaiting further surgery/homones and depending on what gets said in my next consultation is wether I keep my career or not. I have no money coming in,lost a longterm relationship and have been waiting for four months to get an assessment to even know if I will get any help to pay my rent and bills . I have endometriosis on my sciatic nerve which stops me even laying on my side when it's bad let alone go to work. Every day I wake up in pain and have to wait 2 hours for medicine to work before I can move.

I feel trapped by the system, I can't get back to work in the NHS because I'm awaiting NHS treatment! So the people who are going to fire me are responsible for me being off so long it's ridiculous! I feel unable to put myself in the paper for this reason.

[Hidden in reply to Immunewolf21]

Oh my, I am also employed by the NHS and am having similar frustrations. Has your Occ Health not been helpful? Mine were. Could you not ask for treatment by another Trust? I have - I chose my Consultant and he agreed to see me on the NHS. How about Union? Apologies, I want to help but am sure you have tried everything already. Lots of hugs xxx

[Immunewolf21]

Thank you yellow rose, so many in the same position though, if I was well enough I would put forward the idea of having an endometriosis specialist nurse available to A&E to help people when they are in desperate need and having pain flare ups. I know enough to do the Job just not got the body to do it!

I'll send good thoughts hoping your fertility treatment goes well x

[Hidden in reply to Immunewolf21]

And strangely enough I made a formal complaint today at how poorly i was treated in the gynae equivalent of a and e yesterday. The Registrar laughed at my comparison to labour - saying the pain was hardly comparable. I said I have been in labour and it bloody well is! How unfortunate we are to have a condition that seems to paralyse peoples brains and empathy. Would be fab if you cornered the market for endo nurse advice online or something x

[Immunewolf21 in reply to Hidden]

Oh Jesus it's so unfair what's happening! I now know that unless people have had this deep twisting nauseating stabbing type of pain they cannot understand it. I've dealt with lots of people in pain and really if they say it hurts it normally does! Some get addicted to pain relief but if that's the case they need assessment not premsumption! I really think if endo was diagnosed quicker then the problems dealing with the chronic pain wouldn't get so bad as it gets exhausting trying to prove something is wrong!

I also made 2 complaints unhappy with both responses. I will wait to see what happens before I carry on any further with that. Occupational health have been as good as I can expect I guess but It was stressful, I have been told that they will not recommend ill health retirement though as it is not a endo is not a permanent condition ?? I have told them that it's likely I'll always have the effects from endo as it has affected my posture and everything, I'm walking with a limp at the moment. so it's just the constant pressure to get well but feeling like I need to be put down! Hopefully the next treatment will work. I thankfully now am seeing a gynae in Addenbrookes as ended up having an operation under the orthopaedic team there to diagnose pelvic endometrioma! What do your occ health say? Oh union have been my life saver their was a whole change of attitude from hr once I got them invovled!

[Immunewolf21 in reply to Hidden]

Am I right in thinking it was a male reg?

[shelly144]

Hi ya, yeah my life has changed due to having this disease. Was flogged off at the start being told that it was crippling appendix, pain got worse and worse that I was missing days off School an wen it was my time of the month I would have to miss out any physical activities as I was crippled with pain. After suffering for 7 Years being flogged off changed GP to a female an straight away she revered me to a gyne consultant. After 8months waiting seen consultant and straight away when I told her my symptoms and problems she knew I had endometriosis. She then booked me in for a lap to remove what endo was present. Had to wait a long period of time for operation. After I had operation it was clear I had the disease six weeks after consultant called me back to clinic an advised I need to go on the pill. Due to family problems with the pill I didn't want to go on it. 2 1/2 months after the operation the pains started up again, attend GP which I tried a range of pills, seen consultant again got Marian coil in, tried more hormonal pills, nothing was working. Turning July 2013 I took serious pain so I was admitted to A&E which I was flogged of by a range of different doctors as they were not to sure of the diease and what solutions would help. The last year I was taking infections every two weeks, was just getting fed up with it. Doctors in hospital didn't really care they said the only thing I have left to try is the prostate injections. As I knew I wasn't goin to get anything else I just agreed to them as I was at the stage which I was just fed up and thought to myself is life really worth living, especially with me being young, only started a new job which I really enjoy and this disease just taking over everything. Went seen my gyne consultant, who now didn't really care due to me being young and wouldnt do nothing. Was so depressed after leaving her office. As the injection was having no real effect to the pain as I was still in pain and a few weeks after started to take all the awful symptoms and feeling depressed and the pain still there I went and got acupuncture and Chinese herbal remedies still no pain relief after all the money spent on that either. As my life was being taking over by this awful disease, eating tablets, carrying hot water bottle everywhere, wearing heat patches, feeling depressed, didn't want to go anywhere as I was in so much pain and feared about taking another infection etc. I approached my gp and addressed I want to go private to see a different gyne consultant. My GP got me a good consultant who was very caring and determine to get to the bottom off all my problems. Just after another endometriosis operation in January 2014 and due back to see her in February. All I can is its awful that you have to go private to get any action and help. This diease is awful as there is no cure there is always the chance of it regrowing back. I in person would do anything to prevent it regrowing.

[Immunewolf21 in reply to shelly144]

Oh the story so familiar it's so sad what we are all having to go through, at least we have this site now even if it's just to vent it helps knowing that people understand how you feel huh. I hope you get a long pain free time after your op xx

[Hidden]

Yes my life has changed dramatically. It affects every of my life including all relationships. Every day is about balancing out everything that has to be done and things I want to do. It's also stopped me going for my career goals.

[Brownlow]

What an irony...the reason I don't want to appear in a national newspaper saying that my career has come to a halt due to endo is because I don't want anyone in my profession to know and therefore scupper my chances of earning a living again! I was diagnosed immediately but it has still severely impacted my life in a negative manner. Just because a patient is swiftly diagnosed and treated does not mean the problem is solved.

Fame and money sells newspapers. The way to hook people in and hopefully make them sit up and pay a bit more heed is to highlight the impact of the cost of misdiagnosis and treatment on the NHS, the taxpayer and the UK economy e.g. I'm not working and my husband and I are not spending any money on extras. A study on this subject was conducted in Austria ncbi.nlm.nih.gov/pubmed/235... The percentage of women with endometriosis is currently estimated as being 10% - 20% Numbers equate with the incidence of diabetes of which there is better awareness and earlier, more widespread detection rates. I suspect the presence of endometriosis is higher than the estimate due to poor diagnosis rates.

The other hook is famous sufferers of endo. A picture of someone famous will attract people to the article. Just google 'celebrities with endometriosis'.

[Jembee]

I had a female gynae reg you told me I couldn't be in that much pain as I hadn't vomited or passed out! The fact I literLly sobbing uncontrollable because I can't breathe through the pain should tell you I'm in a hell of a lot of pain.