Do I have Endometriosis?

So I have been horrible pains for over a year now.

From the age of 11-18 I had horrible periods they were heavy, painful and lasted 2 weeks.

Then I went onto the pill soon as I went on this they became a bit lighter and shorter, also the pain was a bit better but I put on so much weight.

Over the last year the pain I experience in my low stomach is horrible I feel extremely sick everyday and the cramping and stabbing pains I get keep my up most nights in tears. I get bloated to the point where I look 9 months pregnant.

It has even made my sex life for me and my partner extremely difficult. Most of the time when we try it is so painful and it hurts my bowels so much that we have to stop, it is getting frustrating for him as we have not had proper intercourse for 4 months now.

At work I am constantly down and low, I am back and forth to the look about 4 times an hour its getting to the point where I dont even have the energy to get out of bed for work each day as I know they are getting sick of me constantly up and down to the loo and leaving work early for doctors appointments.

I have been to the doctors back and forth and always been told I have IBS but recently I went and seen a new doctor at my surgery and straight away she has said she wants to refer me to a gyno and see what they think, she is sending me for a scan which I am awaiting and has also done an internal.

She thinks it could be something like Endometriosis.

I was just wondering if anyone elses symptoms were like mine and how long it tooks for other people to actually get a proper diagnosis and if they were told at first it was IBS but actually turned out to be Endometriosis.

I cannot wait for this scan I actually want some answers I have been back and forth from the doctors and now just feel like I am been a burden to them think most of the doctors there were trying to make me feel like its all in my head but I know something is wrong I can feel it.

I would love to speak with other people who suffer enfometriosis I could really do with all the advice I can get and it would be so much appreciated.

b :) x

13 Replies

oldestnewest
  • Hi, I had symptoms of abdominal discomfort and bloating for over eight years and was told it was just IBS even though I queried whether IBS would make me feel so ill, I also had heavy, fresh bleeding which did not seem to me like a normal period but could not get anyone to listen. Eventually I started to experience abnormal bleeding and spotting and had to have an emergency scan where they found a burst cyst on the ovary due to endometriosis which progressed in two years to a hysterectomy and removal of the other ovary. Please just have this scan for a diagnosis, I urge any woman with IBS symptoms and period problems to have a scan done, If I had been given a scan earlier I could have avoided all the surgery and the health problems I have had xx Good luck and I hope you get your problems sorted x

  • thank you so much for getting in touch. I was told it was IBS a year ago after seeing a gastroenterologist they also told me to cut out all dairy and gluten from my diet in which I did for 6 months.

    After that 6 months I noticed no change, I knew in my body I did not feel right I feel awful every day how can I have these symptoms everyday and something not be seriously wrong, so I kept going back and back to the doctors they then put me on B12 injections to improve my energy which it did for a while.

    A year later I feel even worse I am just glad this new dodctor is actually listening to me and sending me for this scan x

  • Hi I too had problems with abdominal discomfort, bloating, painful sex and was told years ago I had IBS but had no change when I altered my diet. I started to have water infections and was tested for PID which was negative. I never had heavy periods but eventually had continual lower backache which prompted me to see the dr. He was brilliant and gave me an internal and discovered some tenderness and he wanted me to have a scan before I saw the consultant. I was told I could pay for it privately if I didn't want to wait for it on the NHS which I did as like you I just couldn't wait and which showed a small fibroid. The dr said that it wasn't big enough to be causing my problems so I went to see the consultant who after examining me wanted to do an exploratory lap which resulted in me being diagnosed with stage 3 endo. My only regret is that I agreed that if they found anything they would deal with it at the same time not really thinking they would and I wish with hindsight considering all the other problems I have had over the years that I had just had an exploratory lap and then to decide on the course of action.

    I'm glad that you are finally feel your dr is actually listening to you. The problem is that the symptoms for endo are so similar to others hence why so many get misdiagnosed with IBS first. I hope you start to get some answers and to make some progress. X

  • Thank you for replying, i am sorry to hear you had so many problems with this.

    I am trying to get this early if I do have it, I know for a fact this cannot be IBS I am in to much constant pain for it to be that surely. I keep a diary of my symptoms and everyday I am in agony or have something wrong, I am going to keep this diary and show it to the consultant when I get my appointment.

    I am just awaiting to get my appointment for the scan I am hoping it is sooner rather than later. x

  • Hiya,

    Just writing because I didn't think Endo could be diagnosed from a scan unless it's extremely severe? Mostly I have found it is diagnosed through a Laparscopy?

    The diary is a great idea, I did that when I saw my consultant, it makes it harder for them to dismiss you as just a moaner with IBS.

    Good luck xxx

  • Thank you for getting in touch. I am so glad I joined here now feel like I am not alone.

    I know for a fact this cannot be IBS, that is why I started the diary to show that I am getting really bad symptoms not just a couple of times each month but every single day of the week and its getting me down now.

    If nothing shows on the scan then I am still going to badger them and badger them to make them test me for this I do not want to leave it to long as I cannot cope anymore with this.

    Hopefully my scan will be soon I am going to call my doctors this afternoon and ask for the department number for the hospital so I can call them and see if they can get me in for the scan as soon as they can as I am tired of waiting for the letter to arrive.

    X

  • My scans came back clear, since then they've acted like i'm imagining everything! I've had to change medical practice just to get referred to a gynae!

    I found the quickest way to get a scan is via the doctor, if they put you as a priority/emergency it can take only two to six weeks otherwise you'll be waiting forever. The nurses at the hospital I spoke to were unbelievably rude and unhelpful but every hospital is different I suppose. A friend of mine had a four month wait, so she rang the hospital department every morning to see if they had a cancellation, she got her scan in a month that way xxx xxx

  • METHODS OF DIAGNOSIS

    There are a variety of methods that can be used to assess whether a woman has Endometriosis, but the only reliable way to confirm the presence of the disease is by visually inspecting the abdominal organs by a procedure called a laparoscopy. Before a laparoscopy is done a full gynaecological evaluation should be done covering the patient’s medical history.

    endo-resolved.com/diagnosis...

    my daughter has a laparoscopy booked for next monday - private costs £ 2,400 - has to be done as she is only 22 and has been passed from pillar to post - with random diagnoses

    NHS takes 18 weeks from time consultant 'thinks' you may have - but before then 3 months of continuous pill - so you could be waiting 6 months minimum. i shouted and got on the list with only 18 weeks to wait. I refuse to wait as it is my daughters future fertility at stake.

    best of luck

  • thank you for getting in touch I am going to have a read through the link in which you have sent thank you for that.

    I am just hoping mine isnt as long winded as I have been reading with other cases, I cant cope as it is. Had my internal exam thing the other day she swabbed for STI's and other stuff then the other week referred me for a scan I am just awaiting the letter for that appointment although I may call the doctors and ask if they have the number for the department so I can call them.

    I am worrying about my fertility the most I have already had a miscarriage with my partner so I want to know if what I have will affect my fertility and if it does I want to get trying to have a baby before its completely to late. x

  • is endo in your family - if it is you need to tell them this - bring up the subject.

    my daughters scan showed cyst on ovary then referred to consult - cyst had gone but she still had the pains so we pushed for lap view history of endo. they did the STI's which is not nice for any young girl with a boyfriend as he then gets dragged in!!! both thinking the worst because the doctors THINK it is this - when it is not.

    dont give up the more you know/read the more you can discuss with doctor and ask them outright for what you want.

    good luck

  • I am not sure if it is the family, my mom did have a prolapse is it? She had that a few years ago but I dont think there is a history of endo in the family.

    Yeah the STI checks I worry about I know I do not have anything but it is one of those things that isnt very nice to be associated with.

    I wont give up I have kept going back to the doctors over and over for the past year seen 4 different doctors and I am on my 5th now and finally been referred for a scan she was the one who actually told me about endo so thats a good thing.

    I am keeping this diary everyday got a sheet for morning-early afternoon then sheet for evening and night jotting down how I feel and stuff like that then when I go and see a gyno will give it to them.

    x

  • I finally have my appointment for my scan, got to go on the 29th November so hopefully might be getting somewhere although I know that endometriosis cannot be diagnosed through a scan I might get some answers and if I dont I can still keep going and badger them to give me some answers.

    I have been feeling so bad over the last few days my stomach cramps have been so bad, I feel so sick and lethargic.

    Also now I feel so hungry but then when it comes to eat I cant eat anything or when I do I get to full to quickly and feel sick.

    I will just be so glad when I can get some answers x

  • Hi I seen you post and I have had the exact same experience as yourself. I have had constant consitpation and had extremly bad pains in my lower abdomen, and pain during intercourse which is having an effect on my relationship because I get so scared to have sex incase it hurts. I have been given so many different medications to treat IBS but noting works at all, I have recently moved house so had to change doctor surgery and they are great they took swabs the other day and done an internal and Im going in for blood tests on Tuesday and waiting on appointment for an ultrasound if all this fails im being reffered to a gynacologist so im hoping i can get this resolved because I just feel so down all the time!

    Hope you have had a solution xxxx

You may also like...