How did you go about getting diagnosed with Endometriosis?

Hi first of all I am new to this website :)! & I thought I would explain my story so you can understand my question :)! (I also apologise for how long this is going to be I've been desperate to speak to people who actually understand me!)

I am 20 years old and have suffered from extraordinarily painful periods since I started them aged 14/15. The older I got the more symptoms I started to get. I usually feel ill 2-3 weeks out of the month either by feeling sick, having cramps and generally being tired all of the time. The first day of my period is the absolute worst.

I get/have: incredibly painful period pains, I am physically sick, I have diarrhoea, I get a fever and sweat so much whilst shivering because I feel so cold, I feel dizzy and faint, my legs switch from feeling numb or having this weird pain shoot in them so I am unable to walk, I feel so tired and weak etc!. The only thing I don't really have is the heavy bleeding - I would say my periods are heavy-ish the first two- three days then they are quite light.

This literally goes on constantly for hours and hours - the only thing I have been able to find to help ease the pain is if I literally scold myself with a hot water bottle to take away the edge of pain. I literally cannot do anything around my periods they are always irregular so I can never plan around them and have missed so many days from work and uni its becoming a massive problem!

After researching on the internet my symptoms I came across the term Endometriosis and finally I felt like I had found something that could be wrong with me as all my symptoms matched! It was a huge relief thinking there could actually be something wrong instead of people just assuming you were over reacting! A year and a half ago I went to see my doctor and explained to him my symptoms and he suggested that I go on birth control to ease the symptoms. I had been on numerous versions of the pill years before and it ended up making me be sick so he decided to refer me to the hospital.

Once I got to the hospital and explained my symptoms the lady doctor (I think she was a trainee or very new as she had to check something over with a sr doctor about what to do with me) and said they wanted to give me an injection to put me through a temporary menopause for three months to see if my symptoms are still the same. Doctors know best right? So I agreed and was told to come back in three months to see what happened. Without my periods I didn't get any of the symptoms I only felt mildly sick a few occasions and had a few experiences of slight cramps but everything else was fine. Upon going back to the hospital (to see a completely separate doctor to the ones I saw before & another trainee or recently qualified one) I explained my symptoms and how they had not happened since my period and he simply diagnosed me with having bad periods and to come back in another three months to see what had happened with the injection out of my system. I had no scans or tests or anything and I had just been diagnosed with bad periods and that my symptoms were just the result of the hormonal changes during the time of my period. I felt so upset and let down that nobody seems to be taking me seriously :(! I think a lot of it comes from the fact I don't describe my periods as heavy?

My periods since have been absolutely horrific and I am getting to the point where I would sell my soul to the devil to not have one again - I am so desperate! I just wanted to know your stories - how you ended up getting diagnosed & whether or not my symptoms sound familiar to yours? Any help or advice you could give me would be great!

P.S/ I went to a psychic evening last week with a woman none of us had ever met before who didnt know who was coming and she looked at me and told me I needed to get checked out down below asap. So when I asked her what she meant she said I had endometriosis and it's getting worse spreading to my ovaries and bowels. How spooky is that?! Its not a very common thing to know about or just pick out of the air and she didnt even know me! I just thought I would share that because even if you dont believe in psychics its still pretty spooky! lol x

17 Replies

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  • Hello.

    I really feel for you. You are having an awful time.

    Your symptoms can be due to endometriosis but it can be due to other conditions too. The only way that endometriosis can be diagnosed is by having a procedure called a laparoscopy.

    During a laparoscopy a doctor looks into your pelvis area to look for endometriosis or other reasons for your symptoms. A laparoscopy is a key hole procedure which requires a general anaesthetic.

    If I was you, I would ask to be given a laparoscopy and that way if you have any Endo, treatment options can be discussed with you.

    If your doctor is reluctant to do this procedure, you should ask for a second opinion.

    Best wishes,

    Barbara x

  • I just wanted to add that like you, my periods were dreadful from the beginning.

    When I was 17 my dad called an ambulance as I collapsed in pain with a period. I was told I probably had IBS !

    It wasn't until I was 21 and we were trying for a baby, that I was offered a laparoscopy. It was during this procedure that I was diagnosed with Endo and PCOS!

    I am now very old (42)! And have three wonderful children. I'm still struggling with the endometriosis and will probably need more extensive surgery within a year.

    Take care.

    Barbara

  • Thankyou very much for your post! Yes I am aware it could be numerous things I am just concerned that my doctors do not seem to be considering any of them. The main thing that concerns me is I 100% want to have children when I am older and I am worried the longer my doctors put my symptoms down to "bad periods" the less likely that chance would get :(. I hope your surgery goes well xx

  • Have you actually asked them whether it could possibly be endometriosis? x

  • Hi, yes I originally stated my concerns to my doctor and he agreed that it could be a possibility and then I also mentioned it to the first female doctor I saw who also said it could be a possibility but since then nothing else has been said. I think I am going to asked to be referred to an endo specialist when I am next at the hospital just to be sure x

  • I think that's wise :) They should have picked this up themselves, but it might also be worth reiterating that your symptoms improved on the injections - many doctors use that almost as a diagnostic test, so if you were under somebody else you'd probably have had your laparoscopy by now.

    I feel for you with the pain, too - obviously keep pressing for the endo diagnosis, but ask if you can be referred to a pain clinic. I hate to think of you scalding yourself on hot water bottles and long term it's not a good thing to be doing :(

    Sending love and hugs, and good luck!

    C xxx

  • Hey Wrightx. I am 20 and like you have been suffering wiyh symptoms. Unfortunately our age isn't on our side, I have been told by numerous doctors it couldn't possibly be endo because i"m too young.

    It is ruining my life. I have had have 5 weeks off work due to pain and now i'm finding it hard asa bank nurse to get my hours back. My uni degress is suffering as I cant think straight and end up crying over the mosy ridoculous things, my relationship is suffering because sex leaves me in pain, so now I just dont want to do it, and most of all my life is suffering, being 20 I should be out with uni friends, but insted im on the sofa under a blanket feeling sorry for myself.

    Unfortunately I can't help with how you get diagnosed as I myself am struggling with that one. I have been waiting over 8 weeks for my gyne appointment, and until then the docs wont do anything. Make sure you keep a diary of symptoms to show at any appointments.

    If you ever want someone to talk to who is your own age and experiencing the same stuff, feel free to privately message me :)

    Keep your chin up!

    Love Jazz aka Andys_Girl xx

  • Aww I am sorry to hear about what you are going through as I can completely relate! I think my next point of call is to ask to be directly referred to an endometriosis specialist or something on my next hospital visit! I've heard about people having to wait 8 years before they get diagnosed because people dont take them seriously with their age so I completely understand they are less likely to think of that due to our age! Completely sucks when it is possible to get it younger but its never thought of :(xx

  • Apologies for spelling..my phone freezes on certain letters as I type too fast xx

  • According to some doctors I saw once in hospital about 10 years ago I had a cyst on my ovary then but they did nothing about it until August of this year when my GP sent me to hospital with suspected appendicitis and after days of tests and scans they discovered 3 endometrioma on my left ovary. We have been trying to conceive for the last 4 years with no luck. I have suffered with my periods since they started, collapsing in pain on occasions, nausea, etc. But like you've I've been found off with, bad periods, growing pains and the usual rubbish. I have just seen (first time) a gynaecologist who specialises in endometriosis and he has referred me for surgery hopefully within the next few months. Keep pushing for the referral. Good luck x

  • Thankyou for your comment I definitely will not accept that there is nothing wrong again. I hope your surgery goes well xx

  • Hi I just wanted to say I don't suffer with heavy periods so not everyone does but I do get small bleeding in between periods. I had previously had a cyst removed years ago so I was initially sent for a scan and smear tests etc. Once everything had been ruled out I was refered to gyni who suggested endometriosis because all my symptoms are related to the weeks around my period although now I'm lucky to get a pain free day. This was about a year ago and he suggested the lap. I was adamant with him that it was not normal period pain and I hadn't fallen pregnant even though we had never used precautions for years. With this in mind I was booked in for lap and hysteroscopy and to check if my tubes were clear too. So yes I have endo and adhessions and my tubes are blocked so now waiting for a laparotomy, open surgery, to remove tubes and adhessions and endo next month. So be firm and make a list of symptoms and when you have them, ie my hip pain always gets worse around 2 weeks before my period! Then just constant until the week after, so a few good days each month if I'm lucky! Sometimes there is no pattern but after a year of keeping a diary I find explaining it to my doctor easier. I know it's frustrating all the waiting for appointments and feeling your not getting anywhere but keep strong and I hope your next appointment they agree to do a lap as knowing what your dealing with you can then decide the next step.

    Also wow that is so spooky! I've had a few freaky moments when you think omg how on earth did they guess that! I'm a believer so make that doctor listen!! Good luck. X

  • Aww thank you so much for your comment it makes me feel loads better that people have managed to get a diagnosis and help after a while! I feel a little less hopeless now, like I actually have a chance of getting something more done other than being told its just a period. I do hope everything goes well for you and you can have a pain free future!x

  • Hi!

    Like you I have suffered with my periods since starting them at age 11, I often used to get sent home from school with stomach cramps! The doctor put me on the pill at 14 to try and control them but I was also told that I just suffered with bad periods. Over the years I went back to the GP many times and was always sent away with something along the lines of "your period is normal, other women manage it so you need to learn how to manage it too!". Eventually aged 26 I woke up one morning unable to stretch out in bed and I had the most crippling agonising pain in my stomach. I went to A&E and they thought I had appendicitis so I was taken for emergency surgery the following day and they discovered a 14cm chocolate cyst on my right ovary and I was finally diagnosed! It took a long time but the relief of knowing it wasn't all in my head was amazing, I wasn't losing it after all!! Moral of the story is keep annoying them, ask questions, demand answers, demand action cos if you don't it'll be done via emergency and you won't have the specialist you need.

    Good luck I hope you get sorted soon :)

    Jill x

  • Hey Wrightx,

    I am just like you - all the symptoms without the heavy periods! And I was diagnosed with endometriosis last year by laparoscopy, so it's not a global symptom that everybody gets.

    I also had to ask outright for a laparoscopy, so it may be worth doing that - they sent me for an ultrasound first despite my querying whether it might be endometriosis - I was later told that an ultrasound would only ever pick up signs of cysts, not endometriosis alone!

    Don't be afraid to tell them what you want and don't give up lovie. X

  • I have been told the only way to be fully diagnosed is to have a laperoscopy, before that it's just a theory, I was also told by doctors that ultrasound scans can't diagnose it as I've had many. Just keep going back n forth the gp,a nd when the pain is really bad, call an ambulance or get into a&e. More things on your record the better, keep being persistent, I've had to and a year and a half later I'm fanally getting my lap !

    Good luck !

  • I had to wait until I had gigantic cysts in my abdomen and stage 4 endo until anyone listened to me. They could see this on an ultrasound. Insist they check it out and then insist again, don't let them scare you off. Frankly I think it's suspicious that don't immediately assume it's Endo when a woman has the symptoms it's not exactly uncommon. I feel really angry with my GP who I had seen since I was a toddler and I'm changing surgeries soon. Part of me feels like the NHS tries to keep endo a secret so they don't have to pay for it...

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