When will doctors start to do something???

[Andys_Girl]

I'm 21, and have been back and forth to the doctors for the last three years with the same symptoms:

-tiredness

- painful periods

- painful sex

- back pain

- feeling bruised inside

- heavy/ clotty periods

- on and off loss of appetite

- bleeding when I shouldnt be

- bleeding after #2

- bleeding after sex

- bad ovary pain

Etc etc.

I was finally referred to the gynecologist about nine months ago and all they did was put me on the pill back to back for threee months, last time i seen them they gave me the option to have a menopause injection to see if there was a link between my symptoms and my ovaries... At 21 im not sure thats something I want to experience..

Yesterday i ended up back at the doctors again, as ive had excruciating back pain, tummy pains, hip pain, and extreme tiredness, all i seem to want to do is sleep, which is a complete pain as i started a new job three months ago where i work til 11pm at night, i had to quit my last job because of this and i dont want to lose this one either. Every time i go to the doctors im told its a urine infection or that i have very high lukocytes in my urine, surely its not normal to have this every three-six months?? Does anyone else have this problem?

Yesterday i was also told that there is probably no link between bleeding when opening my bowels and my gyne problems, they told me to get my gyne problems sorted first then they would advise me to look into the bowel problems, but i feel the two are connected.. Does anyone else get this?

I feel so completely and totally fobbed off, yesterday was the 3rd time ive been told it wont be anything serious because of my age.. Well to me being 21 and having no energy at all isnt a good sign either! Im not exactly an exercise fanatic or a skinny minny but im not huge either so my weight shudnt have too much of an impact :/

I just wish someone would listen to me and put all my symptoms together rather than focusing on just one symptom at a time...

Thanks

Jazz

Xx

[Hidden]

I've been going to the doctors for 4 years, I am 16 now and the doctors still haven't done anything... They havent done anything, not even mentioned endo but my aunty has it and I have many of the symptoms... I can't live a normal life and it is killing me... I'm starting to feel like giving up hope but will see what my new gp says tomorrow and I will stay strong... Just push them, don't give up and don't let them give you an unclear answer. Good luck.xxx

[nataliebell]

Hunni I'm in the same boat as u had it since I was 17 I'm nw 23 been back and forth from for years and still no where still in pain its made me depressed

[Yazza]

Yes defo sounds like endo and I get all the same symptoms I did have a lap last year and it was confirmed

But I was told it was minimal but it wasn't treated as it was on my ureter but I'm now getting constant back pain with blood and protein in my urine it's been confirmed there's no uti so I can only assume it's the endo playing havoc with my kidneys!

I'm waiting in a scan for kidneys and tubes.... But I also bleed from my bowel and suffer terrible constipation more so when I ovulate and with my period! Don't go give up go to the doctors armed with information and keep a pain & symptom diary then they can't ignore you (you can print this off from the bsge website and there is also a questionnaire about bowel and bladder function) still if no joy change gp it's very easy to do...

What area do you live in?

And good luck your not alone. X

Sharon

[Vickal]

Don’t give up going back. It took me 4 years to get anything other than painkillers for my issues and swabs for std’s! As I’ve learned from this forum this is not unusual!

As a stroke of luck I happened to get an appointment with a GP who had just returned from maternity leave and who was very sympathetic. She listened to all my problems and referred me for a transvaginal ultra sound and then to gynaecology. Try another GP or if you can afford it pay for a private appointment with an endo specialist. They will know that Endo can affect your bowels and it’s likely that your bowel problems are linked to your gyne problems.

Have they already done an ultra sound? If you do get one don’t be put off if this finds nothing, often endo cannot be seen on an ultrasound. My scan only showed one cyst on my ovary but my GP was clued up enough to know that my pain needed further investigation. It was only my lap that diagnosed my endo (bladder, uterus, ovaries, p.o.d & appendix).

Hope you get some progress soon xx

[Andys_Girl]

Thanks ladies, its nice to know that I am not alone and that the way I am being treated, (although wrong) is normal.

I had an ultrasound about two years ago and they found nothing, and i was basically left then for six months with no explanations or further investigations, until i went back to the doctors with the exact same problems just worse.

Everytime I have high lukocytes in my urine they send it off and it comes back that I have no uti so I dont understand why they arent investigating further as I am always complaining of awful kidney pain, usually thats the first thing that happens when it flares up, my kidneys really hurt, then my ovaries, then my bowels, and tiredness and then i become moody.

All they done for me yesterday was take bloods to test for low iron and sent off my urine for further tests. I have to go back on Friday for another smear test because they didnt label my last one properly, so that basically means i can look forward to a whole day of tummy ache afterwards!

I think the hardest part about all of this is trying to get people to believe that you are feeling really bad, no one else seems to understand what it is or how painful it is, at 21 they jus look at me like im being lazy or looking for attention :/. Im really lucky that my boyfriend is so understanding but my family arent so much.

Im currently under the welsh nhs but have just moved to shropshire so i think i will be moving to the english nhs which will mean new gps, so hopefully that will help.

Does anyone here have to see a different gp everytime or do they see the same one? Because the other thing im finding is that everytime i go back its a different doctor and you have to start explaining from day one which when uve been going three years is actually a long way back. Its hard to remember every symptom etc. i keep a pain diary etc but half the time appointments arent long enuf to get past the first page! So far ive been told i have ibs, pelvic inflmatory disease and been tested for every std under the sun (all negative!), had god knows how many blood tests and internal examinations along with urine samples and the funniest of all pregnancy tests... Its such a long painful experience i just wish there was someone out there who would listen and link all my symptoms not just one or two!

Sorry to write such a long reply but as you all know its hard to talk to people who dont understand so today i really needed to vent!

I hope you all get some progress too as soon as possible! I feel everyone of your frustrations!

Jazz

Xxx

[Elwood]

Have you looked at interstitial cystitis as well? Some of your symptoms point in that direction too. I feel your frustration, it took 12 years for me to get a diagnosis. The problem is with diseases such as endo you don't "look sick" so people don't understand. I hope you get some answers soon x

[Andys_Girl in reply to Elwood]

No no-one has ever mentioned that? I dont get any cystitis symptoms tho, no urgeny to urinate or burning when i go, do u still get normal symptoms with interestital cystitis?

Thanks hun

Xx

[Elwood]

Not sure really I notice a lot of people call it "endo's ugly sister" worth reading up on if the doctors aren't giving you answers. I don't have it myself but a lot of ladies in here probably do. I mentioned it because you say your kidneys hurt, endo on the kidneys is actually fairly rare but obviously not unheard of (they are checking mine next op) but there may be something else going on there too xxx

[nataliebell]

That's the way I feel was told had ibs nw I have been tested that I don't still a ? Over my head pain is still there and its like electric shocks all day I'm so depressed my mum had endo before I was born bt gyno said it can't be passed on by my mum so scan of gallstones soon then back to square one again x

[Andys_Girl in reply to nataliebell]

It is really frustrating, the only person in my family i know that has had something like this is my aunty but i dont really have much to do with her so i dont know how bad hers was etc. It makes me mad that because i am under 40/50 they dont consider there to be anything wrong.. I mean what kind of 21 year old chooses to feel this way!? I certainly wouldnt if i had the choice! I put on weight cuz i sit at home at a night cuz im too tired to go out and do any other activities, I dont go on nights out with friends because im too tired or in too much pain, and my moods are all over the place that i get moody over stupid stuff meanin im not the greatest person to be around!

None of this seems fair to me at all! xx

[nataliebell]

I'm the same

[nettet]

So sorry to hear that you're all going through the same thing I went through. I know it's hard when you feel terrible, but try to keep fighting the doctors. I finally got diagnosed at 25 when my symptoms got so back I was admitted into hospital with a suspected appendicitis. I really do not understand why they are so slow and reluctant to think of Endo - it's not that uncommon.

Nataliebell - I don't think your doctor knows what they are talking about with the no link between mother and daughter. According to the Endometriosis Foundation of America (endofound.org) "A woman or girl with a mother who has endometriosis is seven times more likely to have the disease herself". My mum had Endo too and it was her going to the doctor with me saying my symptoms were the same as hers that made them start to take notice.

Good luck everyone. Hope you can get some answers soon.

xxxxx

[nataliebell in reply to nettet]

Thank you hunni will deffo take my mum with me bc she collapsed with the pain in public and she doesn't want me to be the same x