The doctors think i have this what has been wrong with me for the last 20 years??!!!!

I am a 34 year old woman who has had medical problems on and off for 20 years. I started my periods when i was about 13 and were a little uncomfortable but manageable. When i was about 14 whenever i exerted myself through physical activity when i had my periods i always became very ill, very weary often causing an episode of vomiting which in turn meant that my GP sign me off my PE lessons at school for approx a year. In the years between 15 to 16 i was hit with a terrible bout of depression which has stayed with me until approx 7 months ago (fingers crossed this remains the case for many more years to come) When i hit the age of 17 till now i have suffered with a terrible back ache going to the GPs about 50 times to get help, medication, acupuncture, ultrasound therapy only to be told when i was approx 22 it was all in my head and caused by my depression :( When i was 22 i gave birth to my first child after 3 years of trying to conceive and was lucky enough to fall pregnant 3 more times naturally (even though i was on the patch!) I have had 3 C-sections and on my last one was sterilized. In between have children i have 2 marina coils fitted, one fell out after 30 days and one in-bedded into the wall of my womb having to surgically removed. In 2009 after my last child i began to have very very periods which were very painful. When i had my period it would feel like my C-section scar was anchored on to my hip bone and would pull when i moved, coughed, sneezed, picked up anything heavy, rolled over in bed and would leave me in agony as it felt like a knife was stabbing me inside. In 2011 i had a surgery to laser the lining of my womb to relieve the heavy bleeding and it was a great success. BUT the one thing that has never left me is the pain. I spend at least half of the year in pain and when i asked the doctor about it he said just manage it with pain relief and come back if it gets too as a mother and wife, after being told that i make up pain due to my depression, i have trooped on for 5 years of pain :( ....AND it was only when i rang out of my pain relief without noticing and needed to see a doctor to get some more yesterday...not being able to see anyone in my practice for 2 weeks..and going to the emergency doctors last night that Endometriosis for the first time was mentioned to me after talking through my history with a locum (he is writing to my GPs to request a referral back to the hospital with a view to have a camera thought the tummy button)....I spent all last night reading up about this condition and i seem to tick so many boxes, could this be what i have? Have i really suffered for 20 years without any real care taken to put two and two together? Could i have spent many years without all this suffering rather thinking i was making up this pain due to ill mental health? ...........Please tell me your experiences and guide me to what i can expect for the future...i am just so confused at the moment :( Much love to all xx

6 Replies

  • It tookme 29 years to get diagnosed..... much the same saga of problems the first period onwards. And there are plenty more of us on the forum who have had a very lengthy wait for any medic to put all the clues together and mention endo.

    You're far from being alone. Sadly that is very common tale for those of us above certain age. When we were teens, the GPs really hadn't clue about endo, and if they did know anything it was the mistaken belief that a hysterectomy was the only cure and they wouldn't have wanted to put us through it so young anyway that they probably thought it best not to mention endo.

    Move on 20 years and the wonders of the internet and today's teens have much much better prospects in regards to getting diagnosed and treated and preserving their health. That applies in the UK, but world wide there are still so many issues regarding getting diagnosed and treated for what is such a very common and yet catastrophic medical condition when left to its own devices.

    Welcome to the club. You medical history is about as 'endo' a story as you can get.

    Next stop is referral to a gynaecologist. I would suggest given how long this has been going on that you take a look at the accredited list

    of endo centres and select a couple near you, check they are NHS (a few listed are only private health care ones) and then write down the details and take the to your GP and demand a referral to the endo centre so you can see a specialist, not a bog standard gynecologist (the type you will have seen so far) but an endo specialist gynaecologist. It may in due course turn out that you need a bladder and bowel endo specialist too, but for starters its the endo gynaecologist you need to see 1st.

    Have a diagnostic laparoscopy which will enable the surgeon to map out the extent of the disease and how deep it is growing and where, and determine if other specialist surgeons will be required t a later date op.

    It is possible that the existing endo is easy to get at and remove in the diagnostic lap op, but if there are complication and it does sound like your may be bit further down the line than the basic endo cases, then subsequent surgery could well be necessary.

    After any surgery it's matter on managing the remaining existing endo if there is any, or prevent new endo patches forming - that usually involves stopping periods - which with the lasering you have had done already in there is usually enough, but perhaps the medics will want to try you on hormone treatments too.

    It certainly does sound like you have endo there, and a typical journey to get to the point of it being recognised. It really is so damned frustrating that any of us have to be treated so shabbily for so long by GPs who simply don't listen to us, and do not read through our medical notes.

    Over 10% of all girls and women have endo. Why is it so hard for the medical profession to spot the numerous signs forcing us to suffer needlessly for years and years.

    have a look at the polls on this forum, because you'll be shocked at just how many of us have suffered since our 1st period, and the average is still around 7 years to get a diagnosis even in this day and age of technology.

  • Thank you so much for reply, understanding and information. In all my years of issues the thought of having endometriosis did not even cross my mind... i just presumed that i had scar adhesions from my last of three c-sections!! BUT the more i research and read i am left thinking that it very well maybe a possibility...i suppose only time and an operation will confirm either way what is going on. Although a diagnosis will be much help and will enable me to understand what has been happening for the last 20 years + it will also be such a shame that if it is Endometriosis and i having asked for help for so long that i was made to feel that i had made all the symptoms up.... good luck and health to you xx

  • Hi. Impatient has given good advice. I would definitely try and see someone at an accredited centre. It took 32 years for me to get diagnosed. I have just had excision surgery and am hopeful that will be the end of it for me. Stay strong and I hope you get some answers sooner

  • Thank you so much for taking time to reply.... i hope that your surgery was a success and that your symptoms subside ....good luck and health to you x

  • I too do not know how long I've had it. I remember having lower back pain bad a few years ago and the doctor tested me for a UTI, which was negative, and said I probably just had back pain. Now I'm almost 35 and this is affecting my fertility. I really wish I would have known sooner.

    I really wish you much luck. :)

  • Thank you so much Aprilknelson is a tad frustrating is it not? When you know something is wrong and the correct measures are not taken to investigate fully. Many thanks for your well wishes and i hope your back feels better soon... good luck and health to you xxx

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