20, in pain and probably have endometriosis

Hey all

My question is: is it normal to be told I probably have endometriosis and just being put on the pill without even being referred for a laproscopy

I don't really know where to start I currently feeling like jumping on a plane and hiding forever I am terrified and the gynae I saw today was no help at all. Basically, my story is that I have always had horrendous periods and in the past 2 month I have had the most awful uncontrollable pain, I am up most nights unable to sleep, I can't wear tight clothes, I can't bend over, I can't work, I just feel like I can't physically do anything. The doctors went down the gastro route first of all but didn't find anything and so I saw the gynae today. It was a surreal experience I was sure I had endometriosis for a while so that wasn't a shock but I thought I was going to be referred for a laproscopy and book it in and it would be a more positive step forward. I have just been put on the pill and am having a follow in 3 months to then be referred to the endometriosis unit- whether I am in pain still or if the pill stops the pain. I have to wait a few weeks before I can start the pill tho.

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  • Unfortunately this does sound about right. I'm not saying it is right but this is what happens, they try to rule out as much as possible before doing the lap. I've been fighting for over 10 years with ridiculously heavy periods, debilitating cramps, anemia from all the blood loss plus a whole host of other symptoms. I've had every birth control going and I wish I was exaggerating when I say that, apart from sterilisation I've had everything.

    Try going back to your doctor and telling them once again how much pain your in and is ther any chance your appointment to the gynae can be pushed forward.

  • That is really reassuring I mean not fun at all that that is how it works I will keep trying for the lap and keep pushing we will see I don't want to be nearly 30 when I have my first lap.

  • Well brace yourself, it took me until now (I am 34) to get a laparoscopy and I've been pushing since my early twenties. I would advise you to keep going back to your GP, research and find a good gynaecologist or bsge centre and flat out tell them that you want a referral. Unfortunately, your main difficulties are your age and the fact that the NHS is massively under funded so they really don't want to treat you unless you are at death's door, but be persistent.

  • Just saw you've been referred which is good. Don't let them fob you off with a "your scan shows there's nothing wrong" remember endo can't be diagnosed without a lap

  • Have they offered to refer you to a specialist endo centre, is that right? Somewhere on this list? bsge.org.uk/centre/

    If that's the case they are doing the right thing rather than rushing you in for a surgery now. The pill is for pain relief in the short term. Unfortunately surgery is not a magic bullet, and it's important to make sure that you get the right surgery with the right doctor which can sometimes mean having to wait a bit longer, but it is worth it in the long run as it can mean fewer surgeries overall. There is nothing worse than having surgery for endo which doesn't actually help.

  • That is really helpful and reassuring thank you so much. They didn't refer me to an endo centre I have looked at that list just now and the nearest is over an hour away from where I live.

    Is it better seeing actual endo doctors? I mean I feel it obviously would be but will it be worth the drive?

    Also to get referred is that something my GP can do rather than the gynae, as my GP is amazing and will definitely try and push for it on my behalf is that is what I want?

    Would you recommend I get health insurance too as I know this is a long haul thing so it would be easier to go private?

    Sorry for the whole list of questions just got a lot going round and not sure who else to ask.

  • The endometriosis centres are really designed to deal with women who have severe disease or disease that has not responded to conventional treatment and generally if your disease is mild, it can be managed by general gynae. Obviously you don't know yet if you definitely have it or how severe it is. However it is worth being aware of their existence and knowing that specialist treatment is available as unfortunately many GP's and even some consultants are still pretty ignorant and don't know enough about the disease or our treatment options. If you are keen to be seen at a centre I think your GP can refer you for assessment there (though they may not agree to treat you). This is surgery so yes it's worth the effort to go there.

    With regards to private healthcare, I don't have this so I'm probably not the best to advise but I'm not sure you would be able to get cover as you are already being investigated for it. It still might be worth ringing up some companies and finding out. That said, please don't assume that because the care is private it's automatically better. Again, it's all about who you see, not how you see them. You can just as easily see a gynae that can't help you privately as you can on the NHS, the only real difference is that you won't have to wait as long.

  • Agreed but as always private or no, research and make sure you get the best. I ended up going private in the end as I get insurance through work. I was seen, had my lap and my surgery all within 2 weeks. On NHS I spoke to gynaecologist is Jan, had a scan in march, was due a further appointment in June that was pushed back to August due to "unforeseen circumstances" (I've since found that my scan is lost... might be to do with the hacking, who knows). Now recovering well at home - good luck with whatever you choose to do x

  • Hello !

    I am 20 as well, just been diagnosed with endo / associated adenomyosis

    I really think you should go back to your GP and push it. It is awfully difficult to fight with doctors, stressing ... However, have another try or ask your GP to refer you directly to the endo center.

    Hope you will be better soon

  • Hi, I'm 24 and I've just had my diagnosis confirmed for endometriosis.

    Similar to yourself, I've always had the symptoms I have now. I was originally told I had IBS... which is incorrect but understandable given the stories I've been told by other women.

    I had been waiting for a diagnosis for 2 years. The very first thing I was asked to do was take the pill for 3 month blocks at a time. I was told that the hormones in the pill can be used as treatment to soothe the pain as it changes your cycle and tries to prolong the growth of endometriosis tissue.

    In my case, when the pill worked to soothe the pain. That's when the laperoacapy was booked as they were sure it was endometriosis. Sometimes they will try this method to test the waters and make sure they don't put you through unnecessary surgery.

    Hope all goes well and you're not suffering too much! You'll get there.

  • That's reassuring I am glad that is how it works because I haven't seen about going on the pill before the laparoscopy. And 2 years sounds a lot better than 7. In terms of the pill did you have our blood pressure taken before they picked the one for you. My sister my shocked mine wasn't and now I'm scared to take it

  • If you're really that worried please book an appt with the nurse at your surgery and have yours checked. TBH I can't remember ever having my BP taken prior to being given the pill.

  • I'm in a similar position to you, im 20, currently having to wait 3 months to see a gyn, for a good 3 months my doctor was treated me for stomach ulcers, despite me telling him it was linked to my periods. My doctor suggested that I have a coil inserted, after my scans came back clear, but I pushed to see a gyn. I don't want to settle for birth control, as much as it could possibly help, without knowing what exactly it is thats causing all this, especially if there is some growths ect inside that could be removed by a lap, even just to help a little bit. Personally, i feel like i've waited long enough just to even see a gyn, that theres no way I'm walking out of that room without at least being referred for something else, another step forward, because I can't wait any longer than I already have. Ive personally had the pill, and the contraceptive injection, both of which made my symptoms ten times worse, so I don't want to be fobbed off with these again.

    At least you will be referred, even if the pill does help, I just hope you don't have to wait too long :(

  • Yeah fobbed off is how I feel. I'd recommend being strong I just cried at my gynae appointment and then she told be I would be worse off with the surgery due to risk of infection which wasn't helpful. She was awful tho she didn't even explain what endometriosis is and what it means in terms of medical treatment so I have had to come home a properly research. I had looked before but now I have medical confirmation that I most likely do have it I've properly studied everything I can. The internet is great but actually talking to a doctor would be loads better. Go in with your list of questions and insist on a laparoscopy and if not ask for a second opinion bcos at least then you've done as much as you can. So horrible all of this I just feel like I've just start the journey of everlasting pain

  • everyone ive come across so far has been awful in my road to being diagnosed, I've cried after coming out of every appointment because ive either been physically or emotionally hurt by them not being sensitive to me at all. So Im not hopeful to feel any better after a gyn appointment either :( it honestly scares me what we would do without the internet, i would probably still be here thinking i had stomach ulcers, and i certainly wouldn't know who to turn to late at night when something goes wrong, because my doctors certainly don't fill that role. What kind of questions did you ask? I feel like ive done too much research beforehand, that I'm not really expecting anything from a professional I just want some sort of treatment, but it would be nice to talk to someone face to face about this, so I should probably start thinking about some questions.

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