how vital is firm diagnosis?

[Barnclown]

i am 58, and yesterday i started learning about endometriosis. i looked at the excellent endometriosis uk site a bit and found this forum because people i respect have suggested endometriosis is possibly part of my mix.

following a lifetime of treatment at a handful of different NHS clinics, for what have turned out to be secondary conditions, last year i began to be treated for relapsing remitting SLE and MCTD with sicca symptoms (verging on sjogrens), and also discovered that i was diagnosed with lupus as an infant and teen in the usa, where i was born a DES daughter. i'm now under a very autoimmune-experienced NHS rheumy, and had a year on plaquenil 400mg daily which has taken the edge off some of my persistent symptoms.

in light of this treatment for SLE etc, during the past year, my NHS GP and i have been tackling some of my chronic probs with various clinics including GYN, where aspects of my DES daughter birth defects and lichen sclerosus are being managed. last spring at colposcopy (now to be annual) i missed a chance to talk to my great NHS GYN about pain during intercourse, lifelong frequency of urination and violent recurring UTIs (blood, tissue, leucocytes in urine etc, plus the same symptoms i always had before early menopause, i.e. my irregular periods: fever, severe pain diarrhea, vomitting etc (managed with mefenamic acid 500mg), infertitlity, and a predispositiong to lower back/girdle pain, pelvic pain, painful BMs etc etc). also, now i've discovered endometriosis is in my immediate family: only no one ever talked about it.

basically, i'm a toughie who pretty much looks on the bright side of life. and most everyone tells me how conscientiously i've always lifestyle-managed my health probs. and i try my best to do a good job for my drs. but of course i never really feel well, with all this going on. and i am relatively disabled now. whatever, the UTIs are so aggressive, that understanding them has become a priority.

my plan is to mention endometriosis & my various symptoms to my GP and to my GYN. i imagine they have already thought of endometriosis, but have held off saying anything because all these years i've seemed to be managing relatively ok (with mefenamic, antibiotics and lifestyle choices etc etc).

so, my question to forum is:

need there be urgency in discussing firm diagnosis with my drs....is diagnosis vital?

i already get poked & prodded so much....unless there is an emergency, my instinct is to just get into endometriosis in due course. but, you know, part of me wishes this could've been explored earlier during my years of irregular and agoinsing periods, strange discharges etc....well, it would be good to know what it's all been about, and to feel more informed about managing my ongoing symtoms

thanks in advance to anyone who manages to read all this and reply!

[Dusty22]

Hi Barnclown,

Sorry to hear you've had such a tough time of it and I respect your "get on with it" attitude.

I'm not sure whether there is any urgency to discuss it with your doc, I would think it would be worth mentioning, more just to make sure that it has been considered as a possible cause for your UTI's. I know people who have had frequent hospital and doctor visits and have not been diagnosed for 15+ years! Some have foiund that treatment after diagnosis has helped, others not so much...

I hope you are able to get some answers to explain and help manage the UTI's - 'scuse my language, but they're an absolute bitch!

Good luck and best wishes.

Emily x

[Barnclown in reply to Dusty22]

many thanks dusty! i replied to you first, but somehow must've pushed the wrong key, cause it disappeared when i replied to mcgovernaine.

anyway, what i was saying is that last night when i went to bed i was thinking pretty much the way your are in your reply! and your description of UTIs is really terrific (literally)....makes me think it's worth posting a ? here about mine....so: just did that now

you are so right about treatment after diagnosis: and there are the side effects of treatment, e.g. my hero husband has managed life long crohns disease which is in remission, but daily he has to deal with the side effects of several major ops and having been on steroids for decades...

well, thanks again, take care and stay as well as poss

[mcgovernaine]

It's down to you at the end of the day. I was officially diagnosed with endo 2 years ago, after 15 years of pain. It was an enormous relief mostly to know that it was definitely a problem and there wasn't anything else causing the issues and it wasn't all in my head. It also helped me take a course of action.

I now make sure I exercise on an almost daily basis and eat as well as I can, I also do endo specific yoga and anything else I can use to target my endo problems.

As for going through the surgery. I won't lie, for me it was petrifying. The general felt weird before I went under and all before hand I was shaking and worrying about whether or not I actually had a problem or was it all in my head. I've another one coming up. Although I know I have endo, I'm still worried because maybe the recurrence of the pain is in my head...you get the idea.

I will add, I had almost 2 years almost pain free, I had to take paracetamol for my period pain but that was about it! This was utterly brilliant! Really really brilliant, I didn't have to arrange my life around my period cycle. I could do whatever and not worry about collapsing!

It also gave me something I could hand on to my employers to explain why sometimes I'm very ill. It also gave them something to grab and understand and give them peace of mind that I wasn't just someone taking advantage.

That was a bit of a massive answer, but what I'm attempting to explain is that it is down to you and whether it will help with the impact on your life. Will it give you peace of mind? Do you not care? Are you willing to go through the rounds of testing and poking to get a definite answer as to what's wrong with you? Maybe do a pros and cons list. My pros outweighed my cons (and my fear). Getting a firm diagnosis had a very positive effect on my life.

[Barnclown]

another great reply! am grateful big time, mcgovernaine, thanks

you are so right about the comfort of diagnosis!

and yes too about surgery: i've had my share in my time and just about got to the point where i take it in my stride, but.....

reading what you say, i think: yes i want a diagnosis, and my UTI issues are the main reason now, but i don't need to rush into this. i can move one step at a time, waiting for my GYN annual colposcopy next spring.....UNLESS the UTIs get even worse between now and then

thanks again and take care, be as well as you can - i totally agree: am sure my excercise routine, anitinflammatory diet and other life-style management has made all the diff for me over the years, minimising my symptoms up to a point. i feel very lucky though, cause at least my version of all this stuff has been that responsive. not everyone has that sort of luck.

all the best

[Juleyanne]

Took about 10 years for them to diagnose my endometriosis. I was told I had IBS, it was in my head the usual stuff! until after having damaged fallopian tube removed they discovered a bit in my tube removed. They told me in a 3 line letter, I thought nothing of it as I knew little then a couple of years later had the other tube removed because of pain and then another op laparoscopy and hysterocopy found I was riddled with it and it had spread to my stomach. They lasered or cut it away and it was great for a while then came back. Tried Zoladex and Tibolone, pain relief you name it. Then they thought pain was muscular skeletal. Finally they offered me a full hysterectomy but as I have adhesions sticking organs together I fear it may make adhesions worse. So, yes

diagnosis early is essential but seldom happens! Check out Endometriosis UK website.

[Barnclown]

Thanks julyanne: 10 yrs and all of that. So much like the diagnosis ordeals on my lupus uk forum. The dr detective work sometimes (often?) seems hit n miss. And meanwhile, there is irreversible damage. I get your point, and yes before I posted my ? I had studied the endometriosis uk info: printed out the questionnaires etc. but with a heavy heart, cause it took me 40 years to get my Luous diagnosis and to get uk drs to acknowledge my DES defects....if endometriosis is significant in my mix, how old will I be once the diagnosis process is completed....and my impression is, that as with lupus, diagnosis is most successful with an endometriosis experienced consultant....well, onwards & upwards

And thanks again