Undiagnosed

Hi ladies I'm looking for some help. When I started my periods and for the on going years I had really bad painful periods, I would have to take days off school and be bed bound for the first two days. It got to the point where I would throw up and feel faint with the pain so my mum took me to the doctors, they gave me the pill to settle the pain which it did. I have recently stopped the pill and my periods are just as painful as when I was younger, I was bed bound again for two days and now I'm working I can't afford to be bed bound. I went to the doctors and requested for them to refer me to be checked for endromotosis, they said it is likely I have it but yet they are un sure as I am not over weight. They keep putting off referring me, but I can't go on like this the pain is agonising. Any help and thoughts would be really nice, thank you all.

19 Replies

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  • Hi hun.

    I'm really sorry that you are having such a hard time getting a referal and are suffering in such pain.

    Telling you that you aren't over weight so you can't have it is absolute nonsense, I am a size 8 and i have endometriosis and Adenomyosis there are plenty of people who don't fit in there symptoms that have endo but being told not sure because you are not over weight is complete rubbish.

    Do you see the same Dr every time? I would go back and tell them you want to be checked for endometriosis as you have a lot of the symptoms of endometriosis , if that doctor won't then see a different Dr or the practice manager to make a complaint.

    Take a list of your symptoms.

    I am really sorry you are being left to suffer with this pain, are you aware that the only way they can check for endometriosis is by having a laparoscopy?

    I hope this helps hun.

    Joxx

  • Thank you so much for replying! I'm a size 10, it just seems like they are trying to put it off because I'm not "over weight". I went to the doctors Friday and he said he will give me mefenamic acid for the pain.

    I have just recently got back from seeing a nurse practitioner at my doctors and she said she is going to speak to my doctor and see if I can get a referral and if my doctors refuses then I have to go back to the doctors, it just seems ridiculous now. I'm constantly worrying that I'm going to be infertile and I don't really have anyone to talk too about this, which is why I'm so grateful I found this forum.

    They never told me about a laracrospy they said they will refer me for a scan??

    Ella

  • Hi hun.

    It's very bad I had to change Dr because the one I had previously wouldn't do anything about the pain I am in, as soon as I changed Dr she started listening and got everything moving.

    You will usually have a scan first, but endometriosis won't show on a scan but they can see things like cysts, however they don't see anything then the next step will be a laparoscopy which us keyhole surgery they put a small incisions in your belly button and possibly another one or 2 by your bikini line,and they look inside if it is a endometriosis specialist who is doing this if they see endometriosis they can remove it. I know it sounds scary but it really is the only way they can confirm it and the laparoscopy is ok not too bad.

    I hope this helps xx

  • Thank you so much for explaining that to me, it's put my mind at rest. I hope I get this referral if not I'm just going to keep on at them. X

  • That's ok hun you are welcome, I was just reading what you put to the other lady I think taking your mum is wise, I felt Dr's weren't listening to me and I took my mum, I'm 32 and a mum of 3, but it made a difference my mum telling the Dr how this pain is effecting my life and my kids and partner and my parents because they were so scared are of what was causing the pain. I hope that you get the help thar you need soon hun.xx

  • Hi Hun just had my scan! Nothing was picked up on there where do I go from here?? I was sent home from work yesterday the pain was so bad!!

  • Hi, sorry you're experiencing pain and a doctor whose knowledge of endo appears limited - though sadly I am not surprised.

    On one hand weight can have a bearing on endo in so much it can increase oestrogen levels and oestrogen is thought to play a critical role in endo.

    However, when my endo symptoms started some 20 years ago I was certainly not overweight! I weighed 7 stone and am 5ft 1" tall so not overweight (then at least!).

    Unfortunately all too often medical professionals knowledge and understanding of endo is outdated and inaccurate. I still hear or women today being told that either pregnancy or hysterectomy are considered cures for endo even though there is plenty of well documented research to evidence otherwise published within well respected medical journals that are now easily accessible online. All too often women have to educate themselves on this horrid disease when they should be able to rely on the medical experts they are forced to repeatedly go back to see as their issues remain unaddressed and unresolved.

    Unfortunately you may have to push for a referral to be seen by a specialist for further investigations. Perhaps take a friend or a family member with you who can also help encourage your GP to make a referral. Keep a diary of your symptoms and any meds you take so you can evidence what is going on for you.

    If your periods are causing you to be bedridden then this is not "normal" - don't let anyone tell you it is! If necessary see another GP within the practice or even change practices.

    Empower yourself with as much information regarding endo as possible so that if you are diagnosed with endo in the future you will be able to identify the facts from the myths that most women will hear during their life with endo. That way you can play an active and proactive role in your own treatment plan.

    I wish you all the best, Jo

  • Also, the nurse today told me I "might" just suffer with really painful, heavy periods. Which seems mad to me considering I am bed bound for two days I don't understand how they can say that is normal too suffer with.

  • Your periods should not be painful, it isn't normal to have to stay in bed for days, it makes me so cross because they made me believe I was bring dramatic about the pain and the bleeding telling me it was normal and it definitely isn't . Please push for a referal hun xx

  • First doctor I saw pretty much laughed in my face and said it needed to be more convincing than one day of pain for a referral! I have no idea where he got this one day of pain idea from.. It isn't one day at all its 7 years of pain. I'm going to push for it I'm going to call up about 3 this afternoon, I'll let you know what happens x

  • Oh no,

    It really doesn't sound like they are taking any notice, I had the same though it's very common I have lots of have been through this with Dr's, but you really don't need it on top of the pain it's just horrible.

    Let me know how you get on be firm hun just tell them you can't cope with this pain and you need a referal, good luck hun xx

  • I'm being referred for an ultra sound that is a definite! Finally getting somewhere :) xx

  • Oh good hun.

    Well done that's the first step. Did they give you a idea of how long the wait will be xx

  • No they just said I have been referred so hopefully not long!! Xx

  • Sadly it's not the first time I have heard this and I doubt it will be the last. Endo is such a poorly understood disease and I think it's easier for medical professionals to bury their head in the sand. Unfortunately even in this day and age it can take on average 7.5 years for women to be properly diagnosed with endo often being made to feel like they are nothing more than a hypochondriac. I still think if it were a disease that effected men it would taken a lot more seriously and there may be more treatment options or possible even a cure by now! Best wishes, x

  • Thank you so much Jo for replying. I started to get the pains when I was about 7 stone and a half I'm now 9 stone and am still experiencing the same. I am going to push for a referral, my mum is talking about coming with me next time. If I don't get a referral today I'm going to keep on. Again thank you.

    Ella

  • I'm not sure what weight has to do with anything am less than 60kg...the thing is to ask your gp to refer you to gynaecology department no need to mention endometriosis(then tell them when you get there!.)

    My pain is out of this world and iv been diagnosed and had a surgery for it in the past but sadly it back.Yould never believe my Gp said to go take paracetamol! Like I don't know where boots it.I had to cough up £200 just for a consultation at the London clinic to see a specialist.

    I'm glad you doing a scan but insist on that keyhole as well.

    Do let us know how you are getting along woodfield78.

  • I'll let you all know how I get on once I get a date for my scan, thank you for sharing your story makes me feel at ease knowing I'm not the only one the doctors don't seem to understand! Xx

  • Maybe you could put the next referral request in special 'women weight amounts' Language: "Dear Dr. pompous ass (or asses since they often come in teams) I am now going to quit doing anything that could keep my health in check or my weight low. I vow to eat entire cakes for breakfast and 2 overstuffed bean and veggie burritos for lunch followed by a pan of flan. Interspersed will be my only beverage of choice Coke, Dinner will be a real time save since it can all be done via the drive through, because the other half of the commitment is a refusal to move any more than is absolutely necessary. Now I feel that makes me the patient of the year because I'm willing to go the extra pounds to get basic appropriate treatment. Therefore, since I'm continuing to initiate with requests, could you give me a written number for how far outside, of what you believe to be my ideal weight is, I need to be in order for you to do your job and get me to the person who can actually look for what is going on in the hopes that she will be able to help me. If it helps you can write how much I must weigh on this referral form.

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