Confused with Potential Diagnosis

Hello,

The last few months I seem to have been passed around from health service to health service. I experience cramp like pain regularly throughout the month, discomfort during intercourse and more recently intense and debilitating pain after intercourse that lasts around 1 hour. I sought help a few months ago but was referred to have an STI test first. At the clinic they suspected I may have Pelvic Inflammatory Disease and gave me a course of nasty antibiotics. My tests for STI's all came back clear and nothing was followed up from there apart from the pain after intercourse soon began.

I went back to my GP who conducted an internal exam, although did not say anything about that, but suspects I may have Endometriosis. I was sent away with an information leaflet and I have been referred for a Scan as he said surgery to find out would cause further complications. However, I have been reading that a scan will not be able to diagnose this condition? I'm wondering why I have been referred for a scan if the Dr suspects I may have this ?

Has anyone else had this experience? I am not sure how to deal with it and feel increasingly teary and anxious about everything since speaking with my Dr last.

Thank your for your time and any guidance

xo

8 Replies

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  • Hi - your GP is bound by NHS guidelines on how to treat suspected endometriosis and sending you for a scan is not one of them as a first approach diagnostic tool unless it is immediately suspected that you have a particular form, a type of ovarian cyst sometimes caused by endo (an endometrioma). This can be suspected on pelvic examination in which case an ultrasound would be appropriate. Did they say anything about this?

    I'm not sure what he means by surgery to find out complicating things as it is the next stage if 3-6 months of medical treatment are ineffective. That is NHS protocol. Have you had medication by way of a contraception pill?

    If you have and if it has done no good then the next stage of treatment is a diagnostic lap and you should request referral to a specialist centre as so many general gynaecologist miss endo in hidden places and send you away 'clear' of endo when you have it and typically it is then left for years to become advanced.

    Did he do the internal just up the vagina or up the bum as well? And did it hurt? Pain with and after sex suggests endo behind the vagina.

    Although no one can be said to be lucky to have endo, you are lucky that things are in place now to have it treated properly from the start and this is your right. Have a look at my posts on endo and its symptoms, Pouch of Douglas endo and how to find a specialist (click my username). See what you identify with and if nothing has been said about a suspected endometrioma and medical treatment has had no effect then you need to get referred to a specialist. Be sure to read the links at the bottom of the specialist post and take some time writing some notes to refer to when going back for a referral. Be assertive, take someone supportive with you if possible and let your GP know you know the correct procedure. x

  • Hi Lindle,

    Thank you for your kind and speedy reply.

    He never said anything about ovarian cysts and simply said he supects its is Endometritus however didn't want me to have the key hole surgery so would refer me for a scan. I just find this so odd that he says this when the information clearly says it cannot be diagnosed this way.

    I was on the contraceptive pill but had to come off it because of increasing migraines I was getting on it, I came off it about 3 months ago. He only examined me vaginally and it did cause some discomfort however not to the extent of the pain after intercourse. But I was in cramp like pain until the following morning.

    Thank you for the link to some of the information on your posts - I feel as though I need to get a second opinion at another surgery so I plan to take notes of what I know to be true for my body to give the Dr specific information.

    This has been really helpful

    xx

  • Hi - in your reply you have put endometritus which is different from endometriosis. Can you just confirm it is endometriosis that he suspects. x

  • Hi Lindle,

    Sorry yes I did mean Endometriosis -I have dyslexia which is never my friend especially when spelling medical terms! Haha

    Sorry for the confusion

    Xx

  • Hi - will get back tomorrow evening x

  • Hi again

    You need to go back to your GP and first ask why he is referring you for a scan as you understand this would only be done if an endometrioma was suspected on an ovary. Ask if he has felt a mass in your pelvis? If not then say that you have been advised that ultrasound won't identify any other endo.

    Then tell him of your symptoms - pain at any time of the month other than at period time and pain after sex. If you get symptoms such as back, hip and/or top of leg pain then be sure to mention these. Be sure he is writing all this down on your record. Print off my post on Pouch of Douglas endo and give it to him and tell him that you have sought advice from Endometriosis UK and tell him it is from an adviser on Endometriosis UK, that is backed by the NHS, and you have been advised to seek investigation of possible POD endo due to having suggestive symptoms.

    Tell him you don't want an obstetrician going deep into that area, as it is outside their bounds that are limited to fertility and the reproductive organs, and want referral to an endo centre. If he resists refer to the fact that he has already said he suspects endo and you want NHS and ESHRE guidelines following for investigation into suspected endo that confirm the second action for suspected endo after medication has been tried is referral for a lap. If he won't allow it ask him to tell you his reasons for not wanting to follow NHS protocol and to write them on your record.

    Hopefully you won't find yourself in that position but if you do come back for the next action to take x.

  • I've had a very similar experience. I've been told by gynecologist that I should try to wait 4 months before having laproscopy and sent away with pain killers, anti sickness meds and tranexamic acid for when I'm bleeding. I'm in chronic pain most of the time, feel nauseaus and have a swollen tummy. Finding it difficult to work through all symptoms so thinking I may have to push for laproscopy sooner although my gp isn't keen for me to have it unless I really have to so is sending me for another scan. I know how awful it feels and I'm so sorry your going through it (didn't realise how many women it affected until I started researching this condition after it was mentioned to me by my gp). Looks like I will be having a scan soon, but as you said, that doesn't seem to tell you if you have endometriosis and if so what stage you are at. Sorry I don't have more answers. Just thought it might be if some use that there are others in the sane situation. If I find anything out, I'll try to let you know.

    Take care

    Xfx

  • Hi DixieChick,

    Thank you for your response. Hearing from you and Lindle and reading other posts has helped keep me calm since being told. I also experience nausea on a very regular basis and up until now only associated with my body just being over sensitive or the IBS I was quickly diagnosed with last year.

    I feel lucky that it is at least being acknowledged by someone however I feel that the journey has only just begun to get a definitive diagnosis from a specialist. I feel more informed now in the last few days of researching than I did sat in the GP's office. I will let you know what happens as well - good luck in trying to get the care you want and need.

    xx

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