Doctors Think I Have Endometriosis But Won't Do Anything??

Hi im new to this website and wondering if anyone has been in a similar situation to me??

I am 18 and have been having terrible period pains (sometimes so bad that I can barely get out of bed) for about 3 years, as well as stabbing and aching pains when I'm not on my period. I went to my doctor about 2 years ago about the general 'daily pains' I was getting and she treated me for IBS and sent me to a gastroenterologist who did a colonoscopy and it showed up noting. She finally sent me to see a gynocologist 4 months ago who said 'you have probably got endometriosis, get your doctor to prescribe you the pill and that will help with the pain.' It was such a let down after waiting ages for the appointment!! So I took the pill for 3 months which helped with the heavy and painful periods but not with the pains that I was getting at other times of the month. When back to the doctor who has given me a different type of pill which is also making no difference. I feel like I'm at a total loss with this and no one is listening to me, all they keep saying is that the pill will help and it's not making any difference, I don't know what else I can do but I can't take this pain anymore :( I am only 18 and don't want to be in pain for the rest of my life. Has anyone else ever been in this situation if so did anything ever get done??

Thanks for taking the time to read and sorry I wrote so much!!

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12 Replies

  • Oh bless ya hun. It so frustrating that drs are still not listening to us who are suffering from this horrible disease! Unfortunately some gynacologists are pants too! I saw a couple who kept saying "it's your hormones" or "some women suffer more than others"! Makes you go arrrrrrgggghhh! I used to take Loestrin which helped a little, but like you say doesn't help enough. I know it not what you want to hear but I started with pains etc when I was 13 and didn't get diagnosed until I was 27! I am now 31.The average is 8 years to get diagnosed and listened to. But some it can be earlier.

    All you can do is keep pestering, ask to be referred to another Gynaecologist and ask for a Laproscopy and or stronger painkillers.

    Unfortunately it is a chronic illness which we have to learn to live and cope with both physically and mentally. But with the support and understanding of friends and family can help and mean a lot. I hope you have people near you to offer this.

    No need apologise for how long your post was. Everyone on here is willing to listen and offer support and understand.

    Hope you are having as pain free a weekend as possible. x

  • Hi

    I know exactly how you feel it took nearly 20 years for me to be daignosed dr kept telling me it was bad period pains and would sort it's self out once I had family dr made me feel like I was a crack pot and felt he didn't believe how much pain I was I'm every month. I totally sympathises with you but stay strong as you know your body better then anyone. Keep pushing ur dr and ask to be referred to a gynechologist.

    Take care gigie x

  • This is the UK Map of medicine for Endometriosis healthguides.mapofmedicine....

    You can use it to inform yourself of the pathway that the doctors should be considering with you. Knowing this can help you to be more assertive with Doctors and gynaecologists in the UK (if that is where you are based) xx

  • crystal willow - thanks for that link. I don't like what I see - but it explains why so many ladies are placed on GnRH before even getting a firm diagnosis, contrary to the manuacturer's guidelines.

    "Consider Empirical Trial of Medical Treatment"

    Makes my blood boil quite honestly.

    Reading that it would seem that if your pain is under control - no need for surgery.

    Meanwhile - the endo is spreading all over the place and causing havoc on the quiet.

    I mean how many of us have ever been under 'review and monitor' and been recalled for that?

    I know I haven't been.

  • I insisted on knowing the cause of my pain due to conserns about future fertility and refused to use hormones for suspected endo as they changed my personality. But it does run in my family so i had some clout on that front.... it is a frustrating bumch of hoops to have to jump through bit it does say that if you are still in pain then they should consider investigating further so that gives us something to work with when a doctor is blocking investigation.

  • Definatly, though Im still waiting on a gyneo appointment haha.

    The pill only really works on some woman, which sucks but maybe mention it to your doctor and ask for another alternative or demand a referal to a different gyneo?

  • Hi Lauren. I am sorry to hear you are suffering and finding it hard to cope. I am 17 and have only recently started accepting this is who I am and there is nothing I can do to change it, the main thing is keeping a positive outlook and continuing your treatment. You say your doctor won't do anything but there isn't anything more a doctor can do but prescribe you hormonal therapy/contraceptives to stop you from ovulating, which reduces pain. I was also angry with my physician for not 'doing anything' but I soon learnt that they are doing what they can. Prescribing you medication is what the are there for, endometriosis does not go away and a doctor will not make it go away so try and give him/her a break. Schedule an appointment with a gynaecologist and they can assist in performing a laparoscopy where they can burn the endometrial cells off. Unfortunately there isn't more your doctor can do so ask them to refer you to a specialist/gyno. I am on Depo-Provera and I am inlove with it. I've been on it for a year now and I am pain-free, I get very emotional thinking about coming off it and I never will! If you decide to give it a try, note that the first 3-6 months your body will be adjusting to the medication and you may experience some side effects. I had emotional outbursts bleeding for about a month or two but it was only breakthrough bleeding and was not painful because I wasn't ovulating. This stopped and I am now experiencing no side effects and I am happier then ever.

  • Actually there really is a lot more they can do, advancements have been made - it is just that endo still tends to be treated as a gynae problem and ladies referred to general gynaes who are often not suitably knowledgable / trained to deal with it but treat it within their own limits/outdated medical training re endo rather than refer onwards to an accredited endo centre/surgeon where they have moved on with the times and undergone additional surgical training for treating endo. Medical treatment of endo (by drugs) really is only a short term stop gap that does come with side effects for many. Endo needs to be treated at its source and eradicated by excision surgery. Laser treatment has had it's day and things have moved on from there but some surgeons have not.

    What we need is more surgeons taking up specialising in endo surgery - particularly total peritoneal excision.

    More resources/funding needs to be put in by the NHS for training surgeons to carry out specialist endo surgery as there is currently only one surgeon in the UK who can undertake total peritoneal excision wich can be a life changing (for the better) endo surgery, despite it was pioneered over 12 years ago! It takes anything from 5 to 10 hours so not many surgeons are wanting to do this type of lengthy surgery but it is effective as it strips out the whole lining of the peritoneum removing seen and unseen endo. There really is no other surgery as effective longer term at the present time and it is not good that this is not widely available, particularly for those ladies with advanced endo. Most surgeons, even those at some of the accredited centres, only remove patches of seen endo - which is really good and can greatly relieve symptoms caused by that endo that was removed. If is not all removed though, it is that endo that then goes on to cause future problems and require repeat surgeries.

    Something needs to be done to change the way endo is treated by the medical profession. It is not purely a gynae condition but tends to get lumped into gynae and ladies referred to general gynaes who often specialise in different aspects such as obstetrics/oncology/fertility/hysterectomies etc with endo being a string to that bow rather thanthem being an out and out endo specialist. The problem is adenomyosis and endo get lumped together also but are in fact separate conditions, with adeno being gynae - endo not in particular. Endo should be a separate medical genre as it can involve multi-disciplinary medical areas when it affects bladder, bowel, diaphragm etc (hardly gynae). It is really good that specialist accredited endo centres are springing up but ladies need to be referred to them when endo is suspected rather than go through the gynae rooute. Then if it turns out to be adenomyosis with no peritoneal endo - then, yes maybe a job for the gynaes. Often though a person has both so it would still be best to be treated by an accredited endo surgeon.

  • I agree with stevieflp. Endo is best managed with radical surgery. Try to get referred to a specialist who can work with you to find the best way forward for you. Good luck xx

  • Thanks for everyone's replies, I think I'm going to go back to my doctor and ask about another referral to a gynaecologist or any other options that are available it terms of pain relief as I've been told my the nurse to stop taking the new pill I was given as I was getting severe headaches and chest pains with it :(

  • I can completely relate to this post after being "fobbed off" for over 15years that it was just normal period pain. Do yourself a favour and get a ultrasound , and a blood test (for hormone levels) that way you will be able to find out for certain if you have endo and also the extent of the problem (ultrasounds will show any tumors or large growths of concern). Don't take no for an answer .

  • I have the same problem. This has been going on for 3 years now. I have already had the surgery last year and since then I have shooting pains from my uterus to my bottom. The only thing my doctor will prescribe is tremedol. I have been in bed for three years now. I have been missing my life. Even pain management just denied me. This is the most painful thing I have experienced. On top of the pain My ovaries have become enlarged three times the size off and on, cysts grow and erupt leaving painful stabbing pain, and I throw up because the pain is so bad. The doctors even put me on a list saying that I have drug seeking behavior. They wont even help me. Does anyone have any suggestions?

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