My daughter who is now 17 has been suffering terribly for nearly two years with intolerable pain at the time of the month .We have been to

hospital a few times but they just give her painkillers and send her home.She has had her ovaries scanned but were ok .I am wondering if endometrosis and if somebody will listen. This is such am important time for her with exams and UNI and she has had a lot time off with this in the past.I also worry for the future regards fertility if left untreated.

regards

7 Replies

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  • you have some really genuine concerns with her symptoms and the consequences of leaving endometriosis unchecked and you are quite right to feel that it is not easy to get a diagnosis out of doctors.

    I would recommend you go through the following section of the endometriosisUK website so you and your daughter can get a really good idea of how endometriosis is diagnosed.

    endometriosis-uk.org/inform...

    Having the Laparoscopy over the summer holidays seems like the best thing if she is going to uni although she CAN look at defering her first year if she wants to sort out her diagnosis and a treatment plan before starting uni for certain. I deferred my first year for other reasons and, being slightly older and wiser was a benefit.... just saying that the option is there if she needs it.

    Firstly its vital to read the "symptoms" ( endometriosis-uk.org/inform... ) and "diagnosis" ( endometriosis-uk.org/inform... ) sections and then to help your daughter be taken seriously you can look at the "your first consultation" ( endometriosis-uk.org/inform... ) sections.

    Under the GP section of "your first consultation" you can find a useful questionaire ( endometriosis-uk.org/downlo... ) which your daughter can fill out and there is a "pain and symptom diary" ( endometriosis-uk.org/downlo... ) she can start to keep now and bring to the consultation.. that document is simpler and includes some of the "questionaire" questions.

    This should help her be taken more seriously.

    I honestly knew more about the condition than my GP who tried to tell me "there is no evidence that you have endometriosis" and tried to stop me from getting the laparoscopy ... I pointed out that I had virtually all the symptoms and a family history of it where my mother was diagnosed at the same age and now has adhesions to her bowel. She had all her children under 25 years old so I have no idea how my fertility will be effected and I was already 27...

    He said "Oh... does it run in families?" I would not have minded this had he not spent the entire appointment up until that point very decidedly telling me that I did not have endo.

    I did have endo, I do have endo... I can now treat the pain with a knowledge of what is causing it, get the appropriate social support and make life plans baring it in mind.

    You are fab for supporting your daughter, and she will really benefit from having a caring parent advocate for her if she is treated dismissively like many of us have been.

    If the GP is dismissive then you can state that you want to speak to a gynaecologist (even if the GP doesn't think she has it) as there is clearly something going on and it is getting in the way of your daughters future ability to complete her studies and if she was working it would be effecting her work. When I stated that it was beginning to effect my employment they took me a lot more seriously.

    Gynecologists are much better trained to spot endo than GP's.

    One thing I would say is that very early endo is actually hard to see and at her age she could get a false negative but rather than take my word for that discuss it with the Gynecologist and the pro's and cons of doing a laparoscopy at this age.

    I hope this was helpful,

    Good luck and come back if you need any more info :)

    Crystal

    x

  • Thankyou very much Crystal its good to get feedback poor thing has been in bed all day doubled up will need to get this addressed asapt

    take care

    ladybirds xxx

  • All the best, she is very lucky to have you looking out for her :)

  • Meanwhile, for the sake of her sanity and exams, try and get her on to birthcontrol pills back to back to stop her periods, or the mirena coil (which does take a few months to stop the periods) or norethisterone which has to be taken every day without fail or a period will start again. As it seems her pains are considerabl when she is 'on', the best short term fix while awaiting diagnosis is to stop her periods from happening by whatever eans you can.

    Ultimately getting diagnosed and having any endo patches surgically removed is the best hope for reducing endo pains, but it is not a cure, endo has no cure it does come back and new patches will grow, and cysts will form too at some point.

    Pain management and fatigue management is the constant battle with endo.

    Getting diagnosed is notoriously difficult, as it doesn't show up in scans and the only way is with a laparoscopy operation.

    You need to be pro-active and build up a body of evidence to justify surgery, when you are hitting brickwalls with the NHS.

    Try different ways to stop periods and if that stops the pains too then quite possibly endo is behind those pains. Ask your daughter to keep a pain diary, marking when she is in pain and scoring it out of 5 or 10, plus any pain relief she has taken, any other symptoms like upset tummy etc.

    Any side effects from taking the pill or whatever else you try to stop the periods.

    It's very hard to get taken seriously when there is nothing showing up on scans.

    Most of us had endo symptoms from when we started our periods, in my case took over 30 years to be given an op which diagnosed endo, by whch stage it was everywhere, and i was popping more paracetamol than would knock out a hippo.

    If you are getting no where with your GP, then see a different Doc, either in the same practise or move to a new one. There are knowledgable and caring GPs out there, but there an awful lot of dinosaurs who still think it is 'just normal women's problems'. The same group who think a hysterectomy will cure endo !! If they even have the first clue what it is.

    If your daughter wants to join this forum, please let her come and ask questions. The vast majority on here are ladies (with the odd caring dad or male partner asking for help) and for most of us our endo pains started when we were teens too, and we know what it's like being a teen with endo. Those memories do not fade with age. No topics are too icky to be discussed here, endo affects bowel and bladder works too, and moods and depression and social life, work life, relationships...just about everything so asking for advice on here is a pretty safe place. She can use the button to keep her posts only readable to members of the forum.

    There's a super booklet published online by the australians, and it is geered for teenagers with gynae problems. definitely worth showing to your daughter to let her know she is not at all alone in her experience.

    endometriosis.org.au/images...

    it is pdf, so you can print it off at home, or just save it on your computer. Filled with really useful information and tips.

    Your daughter is probably still too young to be given the GnRH drugs that induce a state of temporary menopause, as it does impact on bone density growth and she will not yet have stopped growing at 17, so these drugs should be refused until she is older.

    There are so many things to try in the meantime, and getting diagnosed with surgery is a priority for endo ladies.

    Don't be fobbed off by her Doc, you have to be an advocate for your daughter's health until she is old enough and informed enough to make decisions for herself.

    It is not easy to get a diagnosed lap op when young and with suspected endo,nor are any appointments with endo gynaecologists easy to get at any age. There just are not enough of these specialist gynaecologists to go round. Plenty fertility specialists, but not that many with endo surgery as their specialist subject.Waiting lists are long.

    I am so pleased you as her mum are supporting her through this, she will need your support and sympathy for many years with endo. It's a long journey unfortunately, but she has a future with who knows what medical breakthroughs to help her out in the near future.

    Aside from over the counter pain killers, I found voltarol./diclofenac very good as a muscle relaxant pain killer. it is available on prescription, you only need 2 a day, not handfulls of the normal strength ones, but it can make you drowsy. Still that is better than being curled up in pain. Defintely try and get her periods stopped though as that is really liberating when the pains are just monthly.

  • With regards to her exams, she can have 'special consideration' if you are able to get a letter from your gp informing the school/examination board. If you are able to get a diagnosis that would be even better, but a letter explaining her situation and the medication she is receiving should be enough.

    I was going through the same thing a year ago when my daughter was taking her GCSE's, she had already been diagnosed with endometriosis and had treatment but returned and was waiting for more surgery. At her worst she was on morphine and going into school to sit her exams. The special consideration she received enabled her to get the results she needed to go back to sixth form. Its worth discussing with the school and your gp.

    Good luck and thinking of you both xxx

  • Adding to this, if she is still having significant problems at Uni she can get their version of "special consideration". It was called "extenuating circumstances" at my uni.

    It allows some greater flexibility with things like retakes etc

    Crystal x

  • hi am 16 nearly 17 i have regular periods i have painful periods sharp shooting pains i feel her pain i am sertain i have endo but noone will listen to me i take pnstan from the doctor it helps the pain hot water botles on the pill the now hait it heavey anoing and painful i use to be rushing to toliet all the time being a girl sucks take ponstan though if the pill dosent work goning on painkillers sick of this

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