What is wrong with me?

[dlg19]

Hello there, I'm new to this forum and I've been brought here after two years of feeling crazy and being told that it's all in my head! Just from reading some of these posts I actually feel like a human being again because I'm realising that what I'm experiencing is real.

I'm 19 and since my first period, when I was 11, I have had ridiculously heavy periods. The bleeding was accompanied by excruciating period pain and would leave me tender for the remainder of my cycle. Regardless of life being hell, I carried on and got on with it because I was told it was normal. At this point I didn't have any additional symptoms until I turned 15 and was amidst my prelims for my highers. I couldn't sit for two minutes without going to the toilet, either with extreme diarrhoea or severe constipation with the constant abdominal tenderness.

I lost almost a stone in weight and was told I had IBS, which I accepted however no matter what treatment they tried me on my bowel movements calmed down to a somewhat 'normal' state but my tenderness and pain remained.

Jump to 2014, where I was now experiencing bowel problems, excruciating pain during and after my period, sharp nerve-like pain around my anus, sharp uncomfortable pain during intercourse and beyond heavy bleeding. Not to mention what my doctor described as 'trapped nerve pain' in my lower back which left me breathless every time I had a shooting pain. My GP recommended the mini pill, however it didn't relieve any symptoms. So my GP referred me to have a mirena coil inserted, even though she was reluctant because I was only 17 at the time.

The mirena is a whole other story. I had very irregular bleeding after having regular periods since I was 11. I felt faint and had dizzy spells very frequently and experienced even HEAVIER periods. I kept being told that it would take a few months for it to settle so I endured it. Come September 2014 I started to experience incredibly severe pelvic and abdominal pain low on my right hand side. The pain made me feel incredibly sick, made me double over and feel like I was going to faint any minute. One Saturday morning I collapsed with the pain and my boyfriend phoned an ambulance.

Once at the hospital they realised I had a right ruptured ovarian cyst and a right ovarian torsion. I had laparoscopic surgery and the cyst was removed. The surgeon explained that it may have grown due to the hormones in the mirena coil so I was keep to have it removed. I was told that I would have to wait at least six weeks to recover from my surgery before having it removed so I had a follow up appointment for eight weeks time.

Eight weeks time came and I was doubled over in excruciating pain again and crying hysterically so my boyfriend and his mother had to phone me an ambulance again. Another 8cm cyst was found on my right ovary after having a 5.5cm cyst removed eight weeks beforehand. At this point, I felt hopeless, I was told that I would experience this for life and they had to operate yet again however this time a full incision had to be made.

Since my last operation in November 2014, I have had sudden, unbearable low right hand side abdominal and pelvic pain which makes me rush to the hospital. Since my last operation my coil has been removed and they have found no further cysts however every two to three months I am admitted to hospital and fed morphine to manage my pain, for what the doctors explain is 'nothing serious'.

They aren't willing to do any further tests apart from blood tests and ultrasounds but they keep telling me that nothing is wrong. My last hospital admission was last week where a nurse screamed at me 'There is nothing wrong with you!' In front of the full ward and made me feel so minuscule. All because I was crying hysterically as I had been waiting 5 hours for morphine which was due an hour before I buzzed the nurse.

I am so tired of being told that it's in my head, it has affected my confidence, is affected my relationship of 3 years with my long term boyfriend, is affecting my work life and career prospects and just my day to day life. I don't want to spend my life in hospital on morphine unable to anything. I just feel so hopelessly lost.

I went to the GP again with my mum today and she said to me it sounds like it could possibly be endometriosis. She has referred me to gyn for a possible laparoscopy in 12 weeks time but I found this forum and I experience the majority of symptoms which other brave ladies have posted on here. I don't know yet if I have endo but I haven't feel more understood in all of my life than I do here on this forum. I worry that it isn't endo because I really don't know what I will do from there.

Any advise is greatly appreciated,

Thanks X

Daria, 19 from Scotland

[fedupwithendo]

Oh my you poor poor lady! You really have been through it. I'm not a massive poster on here but your post caught my eye. You have been through so much and at such a young age too. I think many of us on here have felt like it's all in our head, that the Dr's think we're crazy and we over react on things which we should just 'get on with'. I was in my early twenties when I first had excruciating pain from intwrcourse. I remember saying to my then partner that if I e error experienced that amount of pain again I would have to call an ambulance. I started off with an ultrasound which found nothing. I was referred to a gynaecology consultant. She told me it was all in my head and that I have an overactive bowel. Nevertheless she would perform a lap to assure me that all of this was psychological because I had watched my mother suffer when I was little. She had endometriosis, but I can assure you I had no idea at the time! I remember sitting on the bed waiting for my op thinking that I was mad, there was nothing wrong. A Consultant had told me so. She was wrong. I had stage two endo.I remember feeling so angry that I'd been made to feel a fraud.

From that I want to tell you to never give up until they diagnose you. Do not be fobbed off with rubbish. If this procedure doesn't confirm anything then ask to be referred again, and keep fighting for your body and your peace of mind. Don't let anyone tell you what you're going through isn't hard, painful, life changing and quite very sad. It's not normal to be in so much pain and it's not acceptable to live with it. You sound like a tough cookie to me! Don't think you're weak for needing morphine. I'm on morphine tablets daily and they recently did another lap on me to find my endo hasn't spread all that much at the moment, but something is causing me terrible pain in my womb, most days but for a week out of a month it's awful. My periods have stopped for no reason and I'm just 30.

There are lots of lovely people on here that will give you advice and perhaps will have similar stories to you. If you findo this a comfort then please stay on here, I know our situations differ but you can always inbox me. Lots of hugs to you. xxxx

[dlg19 in reply to fedupwithendo]

Thank you so much, I feel like a bit of a fraud on here because I don't even know if I have endo but it would just make sense if it was. Thank you again X

[Deb1511]

Hi Daria

Didn't like to read and not reply, shame I feel so sorry for you, you have been through such a tough time and seams they should've thought of endo before now, I too like you was 11 will 5months before my 11 bday when my periods started, the pain has need horrendous every since I had time of school and was prescribed the pill and strong painkillers to which didn't make a difference, was told I had ibs, I had a miscarriage in 2009 after having my son in 2005 which I was told was one of those things, I go with horrendous period pain every month and explained the older I'm getting now (35) 😢 The worse my periods and pain had become offered tablets and pill, made no difference, always had pain during intercourse and now have no sex life as in September 2014 it became so sore we had to stop and the pain has never left, hospital told me kidney stones admission after admission painkillers, pill weekly trips to my gp scan showed cyst was told was hormonal cyst ct scan showed multiple cysts, had my pre op assessment on the 7th so hopefully I will have my laparscopoy very soon. Hear if you want to talk and sorry if I've rambled on I ain't slept for a week and a half with the pain and the painkillers make me spaced 😡😢 search lindle on here and read her forums she has excellent advice and is so friend babe xxxx

[dlg19 in reply to Deb1511]

Thank you so much. I'm sorry of your situation but similarly I was told it was kidney stones but on ultrasound all of my ultra sounds are fine! They also thought it could have been a burst appendix because of how bad the pain is but nothing. All of my organs are healthy as can be apparently. I hope you get your surgery soon and that it helps you out! Much love X

[Deb1511]

healthunlocked.com/endometr... This is the link to one of her post if you click on it then click on her name and you can read her page of her post Hun, sorry for all info was just Incase you weren't sure how it all worked with being new to site xxxxx

[angelpie12]

Hi Daria, so sorry you've had to go through all this, thank you for sharing your story with us. It makes me so cross that this has all happened to you!😡 Hope you get your laparoscopy and get some answers. This forum is great for talking and asking questions- we won't shout at you or judge you and it's definately not in your head! There's also a good community on Twitter- lots of links to blogs from ladies with endo or suffering without diagnosis yet. Good luck and keep in touch xx

[dlg19 in reply to angelpie12]

Thank you for replying! I was worried no one would pay attention to my post but it has given me some relief. Do you have any recommendations for how you manage in the meantime? Much love and hope you are well X

[Linda511]

You are not alone. Like myself many people on this forum have had to fight to be taken seriously. We all end up researching our own symptoms and trying to find solutions which may help. Hang in there and keep pushing to see a specialist. With all the best intentions in the world GPs and even some hospitals are not informed enough on the condition to be of sufficient help.

You are very brave, don't let the pain define you. Use the frustration and anger the pain causes to fight to get a resolution.

[dlg19 in reply to Linda511]

Thank you a million times! Im actually in disbelief at how many people experience these awful symptoms. Thanks for the support and I hope you are well! Much love X

[dlg19]

I won't lie it sounds very scary but I relate with it almost 100%! Your posts are definitely ones to share with my mum as she is very passionate in helping me find out the answers to my awful pain and discomfort.

I'm currently starting a symptom diary and have been recording my periods for 3 months now, bleeding and pain scores.

Thanks again for all of your help and ill read a lot more of your posts!

Much love and hope you are well X

[FN75]

I'm so sorry to hear what you're going through - it sounds so similar to what happened to me. I can promise you that there is nothing 'wrong' with you - you have an illness that our medical system just does not take seriously. I really hope you start to get some answers x

[Sardad99]

Daria,

Bless your heart!!! I have had to struggle with being told for almost 20 years, "I don't know what to tell you". So I completely understand what you've been through but am so encouraged for you that FINALLY they are performing a lap on you...and I will be shocked if it isn't endo!!!

I am done with my roller coaster of treatments tried and failed and am having a radical hysterectomy next week....I'm scared to have such a big surgery but everyone keeps telling me how much better I will feel, and THAT is what I'm holding on to!!

Please let us know how you're doing and what the tests reveal!

Take care of yourself and hang in there,

Tracy

[dlg19 in reply to Sardad99]

Thanks very much Tracy! I hope you have your surgery soon and feel much better. It's lovely to have so much support. I will keep everyone up to date! Much love X

[Sardad99 in reply to dlg19]

My surgery is next Wednesday, so I'll be layed up for awhile looking to see how you are! Please keep in touch!

<3

[dlg19 in reply to Sardad99]

Will do! And I hope you have a lovely rest X

[sireland]

This sounds awful! Poor you. I'm really sorry you aren't being taken care of as you should.

It took me ten years to be diagnosed and another 8 to see a specialist who removed my endo correctly. That was through a BSGE centre that I insisted my GP refer me to (I really mean insisted). This might be worth exploring, just to know whether it's endo or not!

I wish you all the best of luck and good health. Chin up x

[dlg19 in reply to sireland]

Thank you so much, me and my mum are seriously looking into a private consultation as I don't think Gyn will help me. It's a bit of a pain to be honest but I'll get there I'm sure of it!

Much love and hopersonal you're well X

[abbiclaire]

Bless you! I've just turned 20, was diagnosed with Endo when I had just turned 19! I know the feeling of people telling you it's normal because that's what I was told and was made out to be completely overreacting, fair to say I was reluctant to go to the GP but I was quite lucky because my GP was so understand and straight away referred me to a gyne.

It sounds like you've had such a horrible time, but you seem to have a good network of support there for you!

Honestly hope that you get the diagnosis you're hoping for and this hell can end for you xx

[dlg19 in reply to abbiclaire]

Thank you so much. I'm actually shocked at how many women, especially young women which suffer with it yet medical professionals seem reluctant to do further research. Hope you and well, much love X

[Knickknack]

I would really push for the laproscopy I was diagnosed December 22nd I am 32. Last year was the worst year of my life January 5th I had an ischemic stroke they think from being on birth control and being a smoker I know bad. I recovered fully from my stroke only to have pelvic pain right side inflammation pain with intercourse fatigue dizzy well you know and bladder issues. I was fobbed off until finally my laproscopy which I really had to push for and lo and behold I have endo. I didn't see a specialist just an ob gyn. My right ovary had some bleeding as he put it which he suctioned and irrigated and the distal ends of my tubes looked abnormal. I would try to see a specialist as if you do indeed have it actual excision is supposed to be the best method. You know your own body and fighting against the system makes you more exhausted and feel like your crazy. I honestly wish you the best and make sure you continue to advocate for yourself.

[dlg19 in reply to Knickknack]

Thanks very much for sharing your story. Im sorry to hear what you've went through. I will continue to push to get the right treatment. Much love X