I'm 21and may have endometriosis. My consultant will not confirm it but I feel the condition is getting worse. What do I do?

I'm 21 at have been told I have enodmetriosis by my GP. I then saw a specialist who informed me to adopt a healthier lifestyle (I don't smoke/drink and eat healthy and exercise regularly) to control the condition. I was also advised to stay on the pill that is taken everyday without a break to stop any bleeding. The idea was that if I wasn't bleeding then the lining couldn't build up. This was a year ago. Since then I have started bleeding more regularly, however the blood is often brown and thick rather than red. This is incredibly worrying and is scaring me. I have also got horrendous acne which is located along my jaw and chin which is directly related to hormonal problems and inbalance. I really don't know what to do. My specialist said not to worry until I actually come to wanting children, but it doesn't feel like the 'treatment' is really doing anything. This is affecting my professional and personal life. Any advice would be greatly appreciated.

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  • Hi :)

    I'm 23 and my symptoms started when I was about 20 but I couldn't really link any of them to anything in particular and the Doctors really weren't very helpful. I too suffered nearly every day from the brownish blood which was hugely embarrassing (fortunately I have a very supportive partner) and was making me terribly depressed as it really affected every decision I made from what I could do to what I could wear and as far as any sort of sex life went that just got thrown out the window. I also was diagnosed with adult acne which has totally ruined my confidence and although it is getting better, I can't remember the last time I had good skin that I wasn't trying to cover in about 100 layers of concealer and make up. Then there was the constant tiredness, nausea, pelvic ache and hideous period pain and heavy flow. Coupled with having to try and hold down a full time job I felt that I wasn't able to cope.

    Because of a holiday that has been booked for October I finally decided to go to a private consultant specializing in irregular bleeding and bladder problems (which I have too). I had my first laparoscopy to diagnose endo on the 10th July this year where they got rid of as much of it as possible. Before this I hadn't heard of endo so I am still coming to terms with everything myself. My consultant was fantastic and really wanted to improve my quality of life as much as possible and really managed to pull me out of the depression that my symptoms were causing. She offered me the Mirena coil to control symptoms too but personally, although I think it works fantastic for other people, I don't like putting any hormones into my body as the balance is already quite messed up!

    Might be worth mentioning that although I initially payed for private consultations, they transferred the actual operation over to the NHS as this is a standard procedure offered so this saved me a huge amount of money.

    Now I can only go on my own experience and that hasn't been all that long (a few months) however, I think you should go to a specialist consultant - usually private - and get a second opinion. I know only too well how damaging it can be to let it carry on as it does normally and how awful this can make you feel.My consultant is in Birmingham area - I can give you the details if you want? Because it doesn't sound to me like a treatment - more of a delay in actually treating it. If you have got Endo then a simple laparoscopy can confirm this and new treatment options will be open to you. You will also have piece of mind. My diagnosis has allowed me to relax a little as knowing whats causing all the issues has allowed me to deal with it logically instead of emotionally.

    Because I am not having any hormone treatment I have to control it all by diet and this means really that it is quite a strict veggie diet, cutting out nearly all dairy and gluten. I have two really good books if you are interested in learning more:

    Recipes for the endometriosis diet - Carolyn Levett

    Endometriosis - a key to healing though nutrition - Dian Shepperson Mills and Michael Vernon

    Hope that helps any - really hope you get the answers you need xxx

  • Dear Catness

    Gosh you have been incredibly helpful!! Thank-you so much for such a detailed reply. It really is getting me down and making me feel so miserable. My partner is completely supportive, but I don't think he really knows how to deal with this condition.

    I am in the London area so treatment may be more expensive here, but I will definitely look into it. How did you locate your consultant?

    I will definitely look at those books

    Thank you again xxx

  • I'm glad it was of some help. Interestingly enough I sent this article to my partner today for a read and it may help people close to you understand what it is like living with this condition :

    vitalhealth.com/blog/endome...

    I literally just googled it. I started with private gynecologists and I tried to get patient reviews on them. Once I had a name I could then google the name and more often than not you can see patient stories. I just did a quick google for you and this came up:

    londonwellwomanclinic.co.uk/

    It specializes in endo so i'd start there and give them a call. I chose a female consultant and that helped too.

    :) xxxx

  • Brown blood is normal, yucky but normal. it is old menstrual lining that didn't shed for some time. red blood is the fresh bleeding caused when the lining detaches from the uterus wall. If you are on the pill back to back or have your periods stopped by any other means then that lining stays put for much longer and just like all old blood it loses its redness and turns brown as the oxygen it was carrying is turning the iron in the blood rusty. Like scabs on skin wounds are much darker than the blood that was coming out of the wound in the 1st place.

    Stopping your periods by BC pills or mirena coil is the essential long term way of handing endo, but if the endo is severe enough to warrant surgery then that is the only ideal way to tackle it , with lasers used on shallow endo and excision cutting out the deeper endo.

    At your age it is unlikely or would be pretty rare for the endo to be deeply growing just yet, there are some cases but it tends to happen over time.

    So the doctors advice to stay on the pill continuously is sound advice. It is what you would have to do after surgery anyway as the long term management of endo is by stopping your periods where possible.

    If the pill is causing significant side effects i would strongly recommend you switch brands, there are so many to try out and each has a different balance of hormones, some will make you spotty some will give you different side effects, so it is trial and error to the one that suits you best, and what suits you and your body now, might not suit you in a few years time, so you could have to switch again.

    I would also recommend the mirena to any endo ladies that haven't tried it.

    I you think you do have endo and the consultant is not yet willing to operate to diagnose and treat what endo you might have, then the mirena could be in the mean time.

    It does take about 5 months to get working properly but for most women it does considerably reduce if not stop their monthly periods and period pain for up to 5 years, without the need for tampons, or pain killers or timeoff work etc. It can be a very cost effective solution to stopping periods and no need for daily BC pills either once it is working.

    you can also ask for a 2nd opinion from a different NHS consultant if you do want to push for diagnostic surgery and surgical treatment of endo. It doesn't always result in a complete cure because there is no cure, and after the op you still have to adopt measures to stop having periods to reduce the chances of the endo coming back with vengeance.

  • Thank you so much for such a detailed response. I think I will go back to the NHS and ask for a 2nd opinion.

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