No diagnosis - help!!!

hi all I am writing on behalf of my daughter who has been suffering for years but no one can tell us what is wrong. from early teens suffered with heavy and painful periods . last few years she has felt exhausted all the time, low in mood, and pain in her hips , legs and on both sides of her pelvis. last year had an op to look for endo but none found. Then had Mirena fitted , also carried on with pill, had some relief for a few months then the pain comes back again. I paid for her to see a consultant who told us he does not think she has endo, nor IBS , and suggested an implant and the pill and to have Mirena removed which has been done. for the last few weeks the pain in her pelvis has been awful , particularly at night , a bladder infection was diagnosed and treated, tests came back negative finally after 2 courses of antibiotics but the pain remains. her relationship with her boyfriend is affected as sex is very painful and is always followed by heavy bleeding. last time we saw her GP she informed us that ' some women do get pelvic pain ' and after I insisted she offer some help some amytriptyline for the pain which has not worked. currently my daughter is using a heat pad and hot water bottle as well as co coda mol regularly to try to manage the pain so she can complete the last year of her degree. Also always feels cold even in cyprus in 30 degrees wore a cardigan!

sorry to ramble but want to mention everything I can think of , feel so frustrated as can't help other than filling water bottles in the night!! can anyone suggest anything , she is at her wits end. ps was given a diagnosis of ME but we are just not convinced.

11 Replies

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  • Hi sorry to hear your daughter is suffering, has she had a scan done of the pelvis and internaly although endo cannot be seen on a scan adenomyosis could be a problem it might be worth looking that up, also with her heavy bleeding her iron levels may be very low which can make joints ache keep fighting to find answers good luck x

  • Thanks for taking the time to reply, will check these suggestions out.

  • Has she been checked for Adenomyosis?

    This is very similar to endo - but it is hidden inside the uterus muscle walls and is very hard if not impossible to spot with a laparoscopy camera.

    It is the same as endo - in that it causes bleeding each period - but that bleeding get trapped within the muscles and is very painful.

    These are deep muscle bruises - I am sure you must have had a deep bruise in the thigh for example if you walk in to the corner of a table. It takes a long time for a deep muscle bruise to calm down and for the bleeding to be reabsorbed by the body - same with adenomyosis... pain can last for some time after a period has stopped and certainly it can cause sex pain too.

    IF she has not yet been checked for Adeno - then that would certainly be the next step to take.

    There is an excellent website run by Daniella who is a member of this forum.

    It contains all sorts of information on Adenomyosis.

    adenomyosisadviceassociatio... well worth having a red through - because it certainly could account for the list of symptoms your daughter is suffering with.

    Unfortunately if it is adeno - as with endo, the only cure is surgery to remove the cells in this case a hysterectomy...but as with endo, a lot of relief can be obtained with the right pain meds and stopping periods with hormone drugs like the coil or arm implants or BC pills or Depo-Provera injections etc.

    So until she has finished with her uterus for baby making - managing periods by stopping them will give her the best chances of improving quality of life till she is done with the uterus and can have it removed.

    She can and should still keep her ovaries, they won't be affected by adeno.

    Adeno doesn't spread beyond the muscle of the uterus, whereas endo can go where it pleases and is a surface grower making it easier to get removed from time to time but the area it can spread is vast.

    They are separate diseases - and you can have both, but it is more common to have one or the other.

    Hope your daughter manages to get a diagnosis and treatment to improve things. It is soooo frustrating knowing something is clearly not right but not having a clue what that might be and not getting the right support from the gyanecologists either.

  • A is so much for reply , will check this out now!

  • Hi

    I have a similar experience to yor daughter. I had a lap 2 weeks ago and no endo found. I have found out I have pelvic congestion syndrome.

    Might be worth having a look?

    Tell your daughter not to give up and to also keep pestering doctors.

  • Hi

    I have a similar experience to yor daughter. I had a lap 2 weeks ago and no endo found. I have found out I have pelvic congestion syndrome.

    Might be worth having a look?

    Tell your daughter not to give up and to also keep pestering doctors.

  • I recommend seeing a doctor that you've never seen before and describing her story from the start they may have a completely different view and hopefully a solution! i have endometriosis however was getting severe shooting pains which landed me in a&e, because of my history of cysts and endometriosis they thought my ovary could have twisted and after numerous tests and scans they found nothing and subsecquently sent me home. Luckily on my way out a doctor noticed me limping and asked to speak to me. He found that on my left side the bones in my lower back were crumbling together and trapping a nerve which was what was making me limp and radiating the pain through to the front which is why they thought it was initially my ovary. Because of him i can now start phisio after my laproscopy and hopefully never experience that again! But it could be as simple as seeing someone completely different, i think sometimes doctors get stuck on one idea then when things come back normal they dont understand. I hope that helps a bit! X

  • I recommend seeing a doctor that you've never seen before and describing her story from the start they may have a completely different view and hopefully a solution! i have endometriosis however was getting severe shooting pains which landed me in a&e, because of my history of cysts and endometriosis they thought my ovary could have twisted and after numerous tests and scans they found nothing and subsecquently sent me home. Luckily on my way out a doctor noticed me limping and asked to speak to me. He found that on my left side the bones in my lower back were crumbling together and trapping a nerve which was what was making me limp and radiating the pain through to the front which is why they thought it was initially my ovary. Because of him i can now start phisio after my laproscopy and hopefully never experience that again! But it could be as simple as seeing someone completely different, i think sometimes doctors get stuck on one idea then when things come back normal they dont understand. I hope that helps a bit! X

  • Thanks for this, we wouldn't mind so much if we felt anyone was trying to find out what is wrong, but they appear to have decided there is nothing that can be done , am going to write list of symptoms ready for tommorow nights GPS visit.

  • I had the exact same issue, unfortunately you seem to have to see the right people at the right time to get anywhere. From personal experience I've found male doctors and gynos are much much more helpful. Female seem to think it's just like period pain and it's nothing. Thats just from how i've been treated. A symptoms diary is really useful, and get her to mention ANYTHING it has effected. Mine effected how i stood/walked which could have caused my back problem. If shes missed any work or uni and any social activities, mentioning things like that seem to really push them to do something. I hope you get somewhere!

  • Thanks so much feels better knowing other people have had the same experiences and problems

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