Im worried about another misdiagnosis

Hi everyone, I am going to see my gyno on November the 18th to tell her how 7 months on the pill evenlyn (was previously on Brenda) has made me feel symptom wise. When this all started 6 years ago I was told it was just IBS. She said the next step is to get a mirena IUD inserted whilst asleep and to get a lap at the same time, if she thinks I need it. Problem is, im only 16 and im worried mad that they wont find anything in the lap or she wont even think ill need the operation at all when I see her next. I have EXACTLY all symptoms of endo (chronic pelvic pain, painful urination, joint especially hip pain, nausea, migraines, heavy periods, intense period pain, irregular bleeding... the list goes on) and I am worrying myself sick that I will yet again be told theres nothing actually wrong with me simply because they cant see anything. I am convinced its endo (along with 2 other GP's) and its just a matter of it being confirmed. It really has had an impact on my emotional health as well and this process is becoming extremely tiring. Even my physcologist is telling me its all in my head.

10 Replies

  • Hello,

    First, if your psychologist is suggesting these symptoms are all in your head, I'd find another one immediately!

    No one (even a psychologist) has the right to tell you what you are feeling.

    Secondly, it is very common for women with gynaecological problems to be misdiagnosed over and over.

    Unfortunately, the more tests which come back negative, the less likely the doctors are to try to find the right answers.

    It is upsetting and frustrating that we still have to fight so hard to get a diagnosis and doctors still treat us like we are making it up or putting it on.

    But no one knows your body better than you do!

    So it might mean you have to fight to get the right diagnosis and push hard to get the treatment you deserve, but because you want to get well NOT because you are "crazy"!

    It must be even more difficult to face all these struggles and be so young but hopefully if it gets sorted now you won't have to deal with it for years to come!

    Good luck! It won't be easy, but don't back down!

    Push them to do whatever they can to figure out what is going on and a laparoscopy is a good place to start!

    Hope it all goes well!

    Take care of yourself!

  • Are you in the UK? If so, there are special 'Endometriosis Clinics' , or BSGE Clinics, for its treatment. However, regardless of where you are, a laparoscopy is pretty much essential to absolutely detect and diagnose Endo, so she should not avoid the laparoscopy.

    If you are in the UK you can find far more info on these clinics, how to be referred to them, and the proper pathway that medics should follow to diagnose and treat Endo, by searching through the 'Endo UK' site - link to their website at the top of this page.

    Wherever you are I'm sure guidelines must exist.

    If you are in the UK, if your Gynae is not a 'Specialist Endo Gynae' my understanding is that she could/should(?) refer you to an 'Endo Clinic' depending on the outcome of the diagnostic laparoscopy - but full identification of types of endo and their situation .. and removal! .. should be left to 'Endo Specialists'

  • Thank you for the reply, I live in Australia and where I live there are no endo clinics. fingers crossed that crossed that she says yes to the laparoscopy, however on my first appointment with her she said she dosent really want to because of my age. Thank you again for the reply x

  • Hey Hun. I'm in exactly the same boat as you. I have my first lap next week and mirena fitted whilst I'm under. I'm also worried they'll find nothing and have been told it's IBS! I feel your pain, literally! Trouble is there is nothing you can do but wait and see xxx so tough xxx

  • It is very tough indeed! Such an annoying process that takes forever. I really hope that if I do end up getting the lap, I wont be told that its IBS for the 8th time. My mum has IBS and our symptoms are nothing alike :(

  • Hello there.

    Firstly, as said above, switch psychologists. Absolutely no one can tell you what's going on until a specialist has performed a laparoscopy. Least of all someone who specialises in psychology! That has made me so angry. Unfortunately it is so common that women suffering with Endo are misdiognosed and told they have ibs, 'it's an emotional reaction' etc, etc.

    The only way to find out if you have Endo is to have a lap. If you feel your GP may not refer you for the surgery, take along someone who has witnessed you being so ill. It is very good to have support in these matters.

    As mentioned above, Google BSGE endometriosis clinics and you will hopefully find one in your area. They specialise in Endo more than a general gynaecologist. Insist you are referred there or (if you're feeling physically or emotionally wiped out by all this) ask the person who accompanies you to. It shouldn't be this way but you need to fight, fight, fight for a proper diagnosis.

    Big hugs and good luck xx

  • i wonder if you do actually have IBS but you could possibly have something called PCOS? as the symptoms for endo and pcos are similar, not exactly the same but similar- i certainly hope you get some answers soon though x

  • Apologies, I'm on rather a lot of codeine at the mo and misread your post - I now see the appointment is with your gyno rather than gp. So do take someone with you for the appointment who can help you with insisting on having a lap. If for any reason they refuse to perform one, go back to your GP and request a referral to a BGSE Endo centre xx

  • thankyou for the reply, I know how codeine can affect us :( I initially thought it could be a IBS flare up but never in my life have I ever had so many pelvic/reproductive organ related symptoms. I have exactly every symptom of endo and before I had even heard about it, I would describe my pain exactly how endo sufferers describe theirs...I'm going to be truly shocked and speechless if it ends up not being it :( xx

  • Anyone waiting for a laparoscopy for investigations may not know that looking for endometriosis isn,t the only thing a surgeon will do. he./she will also look for fibroids (large and small benign growths of fat that stick to uterus like glue) cysts, they will poke around at the ovaries for dermoid cysts and look in the fallopian tubes for any residue-all these possibilities are very painful to the pelvic area, cause immense period pains and "flooding" so far a Mirena I.U.D has been the answer, once your uterus has a presence of something your ovaries cease to function and so no periods, no bloating, no heavy pain. Endo is also looked for and if it is dense then a good gynae will "shave it off the walls"with an implement made specially for this.. You might still get pain afterwards for a while but that is to be expected when someone has been "poking around" with instruments moving your organs and bowel; whilst they settle down again.

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