Hello
I am 41 and have been very ill for a long time now. My main problem was put down to IBS for many years regardless of all the trouble I had with my menstrual cycle. Eleven years later I finally got a diagnosis of Endometriosis which was so severe, my gynae said he had never seen a case so bad. It had caused extensive adhesions which have stuck all my pelvic organs together. Along with this I have large cysts on both ovaries and fibroids which despite being previously removed have all grown back rapidly.
Why am I here you ask?
Well after my first op in 2004 I woke up with a rash around my mouth, at the time I put it down to having a tube in my throat. A few days later the rash disappeared and I thought nothing of it. A year later I had a major op and again on waking up I had a rash. This time it got worse and spread to the insides of my mouth, causing small painful blisters. I also got an infection and was given antibiotics which made me feel horrendous.
On leaving hospital the rash cleared slightly, but as the weeks went on it kept reappearing and spreading to different parts of my face, my neck (V shaped area), and my elbows.
It continued to get worse and at its worst looked like I had been severely burnt. I was finally referred to a dermatologist nurse after my doctor had to visit me at home, when I was extremely ill with my Endo problems. She was shocked at the state of my face and said to me “oh dear I didn’t realise things had got so bad“!
So I saw the Derm specialist nurse for over a year. Being put on endless potions and creams to try and cure the problem. I had some results with a couple of creams but the rash always returns. It tends to get worse with my cycle and is far worse in the summer than it is in the winter!
During this time she assured me it was not any sort of contact dermatitis/eczema. But to reassure myself I did elimination tests just to make sure. Nothing I did made any difference at all.
So finally she gave up on me last year and referred me to the consultant at the hospital. I waited five months for the appointment and saw him last November.
The consultant is very old school and wasn’t much for communication, which after years of being fobbed off with all my other things did not bode well with me. He ummed and ahhed and then was just going to leave without saying anything to me! So I stopped him and said “well, what do you think it is then”? “Well it might just be an allergy (NO IT ISNT!) or as I suspect it could be Lupus”.
With that he just left the room and ordered the nurse to get some tests done. I had bloods and urine done and was then sent home. I then heard nothing for ages and was then sent an appointment for patch testing for contact allergies!
I went to the appointment for the patch testing, but wanted to speak to the consultant first to get the results of the tests. But wait they had “misplaced all my tests results”. I couldn’t believe it and said well I want to see the consultant then and forget the patch flipping tests! So this was January and now I have to wait until May until I can see the consultant gain!
I shouldn’t be surprised I always seem to be waiting on the hospital!
I am sorry I have gone on so much but it is difficult to condense my story as so much has gone on.
I wonder if anyone can tell me if a Dermatologist is the best person to diagnose Lupus? I also suffer from extreme fatigue, joint pain and have trouble with dry eyes also. I am seeing my GP next week and I wonder if I should ask her to refer me to a Rheumatologists or not. Although going by my luck I will get another plonking idiot.
I am sorry if I come across as flippant I am not believe me, but the only thing that gets me through is my sense of humour and if I lost that I would lose the plot!
Thanks for reading all this. Any replies are much appreciated!
Regards
Star
I am 41 and have been very ill for a long time now. My main problem was put down to IBS for many years regardless of all the trouble I had with my menstrual cycle. Eleven years later I finally got a diagnosis of Endometriosis which was so severe, my gynae said he had never seen a case so bad. It had caused extensive adhesions which have stuck all my pelvic organs together. Along with this I have large cysts on both ovaries and fibroids which despite being previously removed have all grown back rapidly.
Why am I here you ask?
Well after my first op in 2004 I woke up with a rash around my mouth, at the time I put it down to having a tube in my throat. A few days later the rash disappeared and I thought nothing of it. A year later I had a major op and again on waking up I had a rash. This time it got worse and spread to the insides of my mouth, causing small painful blisters. I also got an infection and was given antibiotics which made me feel horrendous.
On leaving hospital the rash cleared slightly, but as the weeks went on it kept reappearing and spreading to different parts of my face, my neck (V shaped area), and my elbows.
It continued to get worse and at its worst looked like I had been severely burnt. I was finally referred to a dermatologist nurse after my doctor had to visit me at home, when I was extremely ill with my Endo problems. She was shocked at the state of my face and said to me “oh dear I didn’t realise things had got so bad“!
So I saw the Derm specialist nurse for over a year. Being put on endless potions and creams to try and cure the problem. I had some results with a couple of creams but the rash always returns. It tends to get worse with my cycle and is far worse in the summer than it is in the winter!
During this time she assured me it was not any sort of contact dermatitis/eczema. But to reassure myself I did elimination tests just to make sure. Nothing I did made any difference at all.
So finally she gave up on me last year and referred me to the consultant at the hospital. I waited five months for the appointment and saw him last November.
The consultant is very old school and wasn’t much for communication, which after years of being fobbed off with all my other things did not bode well with me. He ummed and ahhed and then was just going to leave without saying anything to me! So I stopped him and said “well, what do you think it is then”? “Well it might just be an allergy (NO IT ISNT!) or as I suspect it could be Lupus”.
With that he just left the room and ordered the nurse to get some tests done. I had bloods and urine done and was then sent home. I then heard nothing for ages and was then sent an appointment for patch testing for contact allergies!
I went to the appointment for the patch testing, but wanted to speak to the consultant first to get the results of the tests. But wait they had “misplaced all my tests results”. I couldn’t believe it and said well I want to see the consultant then and forget the patch flipping tests! So this was January and now I have to wait until May until I can see the consultant gain!
I shouldn’t be surprised I always seem to be waiting on the hospital!
I am sorry I have gone on so much but it is difficult to condense my story as so much has gone on.
I wonder if anyone can tell me if a Dermatologist is the best person to diagnose Lupus? I also suffer from extreme fatigue, joint pain and have trouble with dry eyes also. I am seeing my GP next week and I wonder if I should ask her to refer me to a Rheumatologists or not. Although going by my luck I will get another plonking idiot.
I am sorry if I come across as flippant I am not believe me, but the only thing that gets me through is my sense of humour and if I lost that I would lose the plot!
Thanks for reading all this. Any replies are much appreciated!
Regards
Star