Here goes

So, I am totally at my wits end now. I'm 26, will be 27 next year. It's about 9 years since I began visiting the doctors about heavy periods. When I reached university, having only ever had what I would now call "normal" period pains in my entire life, I fainted. I am not the fainting type. Three years later towards the end of my degree, having been on the pill taking seven day breaks, I'd had a hospital referral with an internal exam. The female doctor had said - "you probably have endometriosis, I'm sure, particularly, in your left pelvis". She then recommended I stay on the pill, and if I ever want kids she "strongly recommend(s) having them before you are thirty". I left and burst into tears, I was 20 and just about to graduate. I didn't even know if I wanted kids, never mind being given a time stamp.

It is now 5 years since that appointment, nearly six. I have in the past 6 years suffered innumerable boughts of bloating, not solved by cutting out diary, wheat or any other food group/caffeine or alcohol. I am nauseas alongside this. I often during these weeks or days have the appearance of someone who is 6 months pregnant. I have become one of those people who needs a wee constantly.

I have been to the doctors about these things and been tested for everything, saying several times to the doctors - could this be something to do with the supposed endometriosis. My pain has also gotten much worse, particularly in the past 3 years. I began to have spasms and dull aches in my hips and lower abdomen and period pains even when not having a break in my pill. After being advised to only have a break twice a year I then had a break after six months of taking the pill without a break. I am a teacher and I reserved this for a holiday week last February.

IT WAS HORRENDOUS.

It was so heavy my mooncup overflowed. I couldn't walk. I was so glad I was home alone and Nick wasn't in because I know he would have called an ambulance. This pain took me to the doctors that same day, I dragged myself in after finally picking myself up off the floor in my towel. When I spoke to that same doctor they referred me yet again (second one in a six month period, still not officially diagnosed here). He said "it's okay though as you have holidays to have these breaks in". I will never forget the look on his face when I stood up and walked out of his office in tears at that.

So I went to my second referral (my previous one had come up with nothing despite all tests but the doctor said implicitly I needed a second opinion and this meant nothing, but his feelings were that due to my age, no matter what, I do not get the surgery). The woman was brilliant, she said I looked healthy in the internal exam (she didn't do a ultrasound), but that due to everything I've said it's quite clear, alongside my family history that I have endo. She then said to continue with what I'm doing. Again, she recommended that if I want children I "save" a laparoscopy for potential infertility problems which would be "solved very easily in a routine way if that occurred". I left feeling more positive, but again, asking about all other symptoms (nausea, bloating etc) got very little response other than "it very well could be".

So my last doctors appointment was with a female doctor in the same doctors. I explained again everything. She checked my stomach, (prodding) told me it felt fine, but then did say that I need not have a break in my pill at all and I should not have been told this. She gave me enough pills for 8/9 months, and again reiterated that another referral could only offer surgery, rather than ongoing treatment, and that it's better if I don't go down this road.

So, here I am, I have looked briefly into private healthcare insurance and I'm considering it to get a better opinion. It's going to be expensive though, and I just don't know what to think or feel anymore. I just don't feel like I'm being taken seriously, and it takes a lot not to just want to break down and cry when I go into the doctors with the same symptoms over and over again.

Just FYI, on top of these, I also regularly have - period pains after sex, bleeding after/during sex, major spotting regularly on the pill, pain during and after internal exams, fatigue.

Just to mention, I am a bodybuilder, I run and keep myself hydrated, I rarely drink more than 1 or 2 glasses of red wine a week and I get 8 hours of sleep. I try not to have dairy at all and haven't for several years.

What on earth do I do next as I am tearing my hair out?

Do I push for surgery and official diagnosis?

Does anyone else have the gastrointestinal problems I've had?

If I hadn't done the research and didn't know it was a load of rubbish I would have asked my long term partner to have kids by now as I've been told many times by many doctors that "things are often much better". Sadly I'm aware this solves nothing.

Sincerely,

Need help😳

16 Replies

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  • GP's clearly don't have the wherewithall to treat you so maybe its time to get them to do a referral to a specialist centre?

    bsge.org.uk/centre/

    There are other hormonal treatments to consider like Mirena and gnRH agonist and it's obvious the pill does nothing.

    You can then also get advice on surgery and weigh up the pros and cons of surgery given your individual circumstances and plans.

  • Thank you so much for your advice, I looked into this, and now have an appointment with a specialist at Pinderfields. I made sure I got the exact doctor I asked for. I'm feeling nervous, I still worry that someone is going to turn round and say "this is all in your head". But I think that's just been the lack of support over the years. Going on here and hearing your advice has been the best thing that's happened with this so far! Will keep you updated!! Xxx

  • Sorry to hear your struggle! I'm 27 soon too and I'm doing my PGCE this year - I've taken time off during half term for my lap where they diagnosed me with Endo after being fobbed off from the doctors since being about 14/15 years old!

    For me, I needed to have a diagnosis to know what was actually wrong to then sort and trial with different contraception. Having the endo burnt away and the implant in has reduced my pain - can't say it's gone completely but has made my life bearable at least.

    Only tips I can give is, keep a period/pain diary and keep pushing if you want answers. Good luck :)

  • In all honesty .... I'm a stubborn sod, so I hate giving in to the pain. But saying that I've also learnt when I need to listen to my body and rest.

    I have zapain but sometimes that doesn't even help so I also have oramorph. I used red tiger balm, deep heat gel, water bottle and lately brought one of those electric heat pads - im well stocked up and pretty much was willing to try anything to help ease the pain.

    On a work front, I keep ontop of my work load as soon as I can, as you just never know when the pain is going to hit and how long for. Being super organised helps - I did a post a while ago called 'teachers advice' some replies I got were really useful, if maybe be worth a read.

  • There is no cure for endo

  • I've been doing that regularly, I actually may just show my doctor this post/ an amended version if they ask, I've also written down specific areas etc. Thank you so much for your advice and support!

  • I'm really sorry to hear you're having such a rubbish time. FWIW, it's really common for the medical profession to do this - I've had problems since my first period at the age of 13 and have heard every excuse in the book. I didn't get diagnosed until earlier this year, and I'm now 39. So that's 25 years of being told that unmanageable periods were normal.

    As it stands at the moment, you don't have a proper diagnosis of endo because you have to have a laparoscopy for that. The best thing to do is go back to your GP and ask for a referral to a specialist BSGE centre (there is a list - make sure you tell the GP which centre and which surgeon you want to see, as there will be general gynaecologists within the same hospital and they aren't the best people to deal with it). You also need an ultrasound and I'm surprised they haven't done one TBH, to rule out anything suspicious. Endo is unlikely to show on it so a clear ultrasound doesn't mean you don't have endo but it's still important to have one done. If they find endo during the lap, they can then make plans to treat it surgically. This might be during that surgery, or it might take additional surgeries, it depends on how much disease there is and where it is, but statistics show that surgery is the best option for dealing with pain and then allows you to manage your condition with things like the pill and the mirena coil.

    With regards to your fertility - it's not that endo is cured by pregnancy, but that the disease causes infertility, and the older you are and the more your disease has progressed, the more difficult this is to treat. And the idea that fertility problems can be routinely solved with a single surgery so you don't need to worry about it just made me laugh out loud.

    Gastro problems are common with endo - it can grow on the bowel and cause all sorts of issues. There is an endo diet which involves cutting out gluten, dairy and red meat but TBH there is very little evidence to show that it works, though some women do find it helps them manage their bowel symptoms and pain. It doesn't cure the disease or stop it from progressing, however.

    You don't need to go private - good treatment is available on the NHS. I'm not sure if you would be able to get insurance anyway - given that you're already being treated for endo they would probably consider it to be a pre existing condition and not cover it.

    Hope you get decent help soon.

  • You can pay for one off appointments and treatment so don't feel you need to take out insurance or will be excluded from private treatment because of a pre-existing condition.

    You need that diagnosis to get leverage for further treatment. Be tenacious. No-one should suffer like this.

  • FWIW I haven't paid for anything and once I found a GP who had some understanding of endo my route through treatment has been very straightforward and I am now being seen by one of the big name specialists at a teaching hospital in London which includes having him carry out my surgeries. All on the NHS.

  • Thank you so much for the support and advice! I now have an appointment in a specialist centre for February! I would never have gotten to this point if I hadn't come on here- I'm hoping it leaves me with more information, support and options! Xxx will keep you all posted!

  • You poor thing. I live for the day endo and the associated illnesses are taken seriously. Just go and have that private appointment. Even it's it's not to get a diagnosis and then get the rest of your treatment in the NHS. I promise you it'll be the best investment you'll ever make.

    I did it over 10 years ago and am so grateful for the diagnosis and my ability to live a pain-free existence. There are treatments that are non-invasive but somehow the NHS are obsessed with treating the symptoms not getting to the root of the problem.

    Good luck and let me know how you get on.

    LBB 😊

  • Got a specialist referral through NHS due to advice on here so I'll let you know how I get on! Hoping for more clarity! Xxx

  • Fab news. Onwards!

    LBB 😊

  • hi there,

    my name is marta and i suffer from sever endo stage 4. my doctor is dr ashwin trehan.

    if i could turn the time first thing i would do is to GET privat insurance asap! WHY? because i have learned NHS doctors wont help you. i have seen 8 doctors in total, some in UK some in germany and some in poland, all gyno and non of them give me a good explanation, care etc.

    another thing, having kids DOES not cure endo! sounds like you can be higher stage (but again level of pain and symptomps does not indicate specific stage- women with stage 3 can have more pain then women stage 4 etc), but saying that talking to mamy many women usually stage 3 and 4 have many many 'side effects' of endo which is what you have: fatigue, feeling sick (usually when your endo is also in your colon), problems to go to toilet, peeing alot, sometimes jumps of temp, AND PAIN!

    It is scary because you can feel alone at times like nobody understands. i call endo 'sillent' suffering. it is nasty and for me it has completely changed my life.

    i had ovary removed in sep by dr trehan and im having 6/01 full excision surgery which will lst 8/10h!!!! im sad because doctors could do much more earlier! i have endo since teens....i know because i can tell.....and gradually got worst in my 20's but in 30's got horrific!!!! got into my bladder and colon! and during passed 2 years down the heal.

    regarding your diet you are doing well and trust me you may see its not worth is because u dont see difference but if u start eating normal pain and symptoms would get worst! i know you cant imagine going worst but they will!

    i also take cannabidiol oil - look into (but rememeber to do good research)

    what i recommend is PUSH it doctors! ask to be referred to endo clinic. dont stop even they look at you like you making this up etc. its your health and i know it can get so frustrating :-(.....

    im in bed in pain...hopefully my last that big painful period before my surgery....

    please please take care of youself and remember to dont give up.....

    search endo clinics and check doctors who works there....and ask gp to refer you there.

    xx

  • I was struggling with very similar symptoms a few years ago, at the same age. I had been searching for answers from doctors for 13 years. I had the typical quick larascopy which was not helpful. I had gastrointestinal problems, bloating, pain, overwhelming fatigue, pain with sex and exams, pain after sex and exams, etc. I was terribly nauseous, despite giving up wheat and dairy, and I had to pee all the time, but struggled to do so. I was at my absolute wit's end but also hesitant about more surgery.

    I couldn't imagine getting better. But I ended up seeing an endocrinologist who treated my thyroid and blood sugar and put me on a real gluten-free diet, and addressed nutrient deficiencies that can make periods harder.

    After some months my endo pain is much improved. My pain level used to be maybe 90%, now it's 30%. Most intercourse is not painful for the first time in my life. I'm not 100%, and still have a lot of fatigue but I am up and about much more.

    I'm not a doctor so I can't recommend what to do, and we are different people, but I feel some similarities and I never thought I could achieve this level of pain management without more surgery. So maybe this will be helpful.

  • there are cases where it has completely cleared up.

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