New (kind of) to Endo

It's a long on girls so bare with me (: I just feel like letting it all out to some one who understands how I feel and not an idiotic Dr! I'm 20 years old and I've been having troubles for 3 years now, the first year I was palmed off with IBS and on one occasion, constipation! (I was not the one full of s**t).

The second year after I had a normal ultrasound done and nothing was found my Doctor told me I was fine and to just get over it. Year 3 and 16 visits to hospital later I see one beautiful Dr at A&E and I feel so lucky to have gotten him as he used to study gynecology! He feels my stomach and ask maybe 5 questions and says I need to see a Gyno. So as blessed as I felt to have had that guy, I went back to my GP and tell him what the ER Dr said and he reluctantly refers me for a transvaginal exam. I had the exam and my left ovary could not be found at all (coincidently the same side as the pain I've had for 3 years?) But my GP still said that was normal and nothing was wrong with me and it's just 'pelvic congestion' giving me all the pain and symptoms.

At that point I actually gave in and got on with it for a couple of months until one night when I was crying in bed in pain, clutching a heat pad my Fiance insists on taking me to A&E and asks to see the Dr we saw before, luckily enough he was on call! I saw him and let me tell you now I just sat there and cried to him, he said he didn't even need to examine me and he knows how much pain I'm in and he can see it in my face. And the one thing that made me feel normal again, he said 'Don't you ever feel like you're crazy or it's in you'r head because it's not.' He wrote a rather aggressive letter to my GP and a couple of months later my GP drops me and hands me over to another GP who then referred me to have a consultation with a specialist gyno! (There is a God!) That consultation was last week and I now have my laproscopy booked for the 20th May. It's crazy but I'm actually excited lol just to know that the past 3 years are all done with now.

I would also like to talk about my symptoms too as I always read these forums and relate so much to the things you all mention, yet if I mention something to my GP they just say 'no, endometriosis doesn't cause that'. So first symptom was pain in my lower left abdomen, that pain has stayed in the same place for 3 years now it just comes and goes, it feels like some one is trying to rip something out from inside of me at times. I have also always suffered with heavy periods all my life and clotting/ almost black periods. Back ache! I have had lower back ache all my goddam life but as of recently it has gotten worse.

Pain during sex, that comes and goes, some months it hurts and others it doesn't but we have been known to go 5 months without it is that painful. Ovulation pain, this one's weird because I only get it on my right but if/when I do I always have a 'good' month symptom wise, if I don't feel the ovulation pain and I'm assuming I ovulate on the left, the pain is a hideous as always.

Now the most recent ones, kidney pain and bladder problems. I have been in hospital over night a few times for my kidneys as I was in such terrible pain, Drs always put it down to UTI but it never was, they never found a UTI they just fobbed me off with meds. Anyway I've had a CT done to check on my kidneys and other tests run due to very faint traces of blood in urine but they all came back fine. I have asked numerous Drs if Endo can spread to your kidneys and bladder (as I know it can, I have read loads of your stories) and they all flat out said no! Some days I am on and off the toilet every 2 minutes, I may as well live there I just can't get any relieve from it. There is a alternating constipation and diarrhoea cycle aswell.

Also in the past 3 months I have noticed on my 4th cycle week I get sciatica pains, my lower back will be worse than normal, when i sit down my right leg will go numb and so will my arm. Tingling sensations all over my body and sometimes shaking if i try to do too much. I have had spinal xrays and CTS done to check for any nerves, or muscles or disks and they were all fine. I only get these symptoms on my last week before my period, when I start my period they all vanish until the same time next month. As per usual though my GP said 'no, endo doesn't cause that' and sent me to physiotherapy.

I can pretty much draw a diagram of the symptoms and the cycle they follow now as I'm so used to it. I only get 5-10 days after my period pain free and it totally sucks but we all know that eh :/ The only way I can find relife is from a cocktail of painkillers; buscopan, ibuprofen and diahydrocodien. Though if i take them they will knock me unconscious so I try not to. And of course heat pads and water bottles, I'm permanently attached to mine.

I have also chosen to have the Mirena coil fitted during my lap as treatment as I didn't want the shot as you can only be on it for 6(?) months. And I've been on the combined pill for the past 5 years and that clearly hasn't helped, if anything it's made matter worse. I know there are some bad reviews about it but there are also some great ones so I just hope it can help me. Even if it just gets me through until after October when I come back off holiday, I'm so worried it's going to come back again.

Thanks to every single one of you that has read all this and I'm sorry that it's so long I just needed to get it off my chest to someone that understands. Thanks again, Nichola <3

7 Replies

  • Well well well, feel like I'm reading my own story!! I was the same juggled about in doctors only reluctantly referred me to gynae due to mums history of cervical cancer! I was diagnosed with stage 4 endo last march had 6 months of hormone therapy but I didn't really benefit from any of it. Just out of hospital last night after an op where consultant removed 70% of endo was in hosp for 3 days with drains and catheter and he says I will only get one years relief from this and I need to return in 6 months for the remaining 30% to be removed from my bowels he needs to be accompanied by a bowel surgeon. On the plus side after 2 years of thinking I was infertile due to this condition. My doc tells me my Fallopian tubes are clear and once he's removed everything he cAnt see why I won't conceive naturally: trust me there is light at the end of the tunnel. It's such a difficult condition to understand gp's try to ignore it when they don't have the answers and even some normal gynae's as they aren't specialist in the condition. My first consultant told me no kids and I'd need a full hysterectomy I was only 26. A year on and I'm on the way to where I need to be! Sending you lots of luck and love you are in good hands now xxx

  • Wow-you are lucky you are so in tune with your body so young,I suffered from 15-38 and still do and I thought it was normal to scream in pain with your period and have terribly painful sex. It was when I started to bleed for 65 out of 70 days that I realised there was something terrible happening... Like you I too over the years reported my symptoms to doctors and they were always dismissive saying all women face the same challenge... 2 days ago I had my second hysteroscope and second laparoscope, curette and merina put in... I feel if this doesn't work, my sanity is lost... I pray for this to save my lifestyle as I'm sick of being sick and tired and having to miss out on life :((( I hear you...

  • Hi Nicola. I can relate to a lot of what you're going through, and like you it's been 3 years of suffering for me.

    I had my lap almost 4 wks ago, although l was diagnosed with ovarian cysts and possible endo after an MRI scan back in 2011. I also had been cryin with pain because I'd been suffering with a bad back for years, but I never got any help from the GP with this problem, so I paid privately to see a chiropractor when I had the money, the GP would tell me to take pain killers and read self help books!!

    3years ago the MRI scan my gynaey recommended showed a herniated disc in my back and crushed lower discs, as well as a bunch of ovarian cysts, the gynaecologist was more concerned about my back than the cysts and recommended i get my back sorted.

    3 years passed with me being fobbed off by the GP, my paying a private chiropractor to help sort my back as referral to the pain clinic at the hospital got me nowhere, in fact she told me to continue seeing the chiropractor if it was helping, she offered me no help at all!! So as well as being in a lot of pain with my back, l was still suffering with terrible abdominal pain, heavy periods, ( I could easily lose a pint of blood in 2 days, I could never leave the house for the first 2 days of my period!!!) painful sex as well as bleeding after and terrible, terrible pain in my left lower abdomen, I could hardly walk, sit, drive or sleep because of the pain.

    I was confused by my actual gynaey problems as the gynaecologist didn't really explain properly my problem or any solution to it as he was concerned by my back.

    Anyway eventually the pain got worse.

    My smears and ultrasound scans, swabs etc were all ok, so I wasn't treated, so I just learn't to live with the pain. I couldn't stand the thought of sex which was a real problem for my husband. Eventually I went back to a different GP, one who was suppose to be really good with gynaey problems, she gave me an internal, then after said she was going to refer me to the hospital to see a specialist.

    About a week later I got a call from the hospital, they said I was being referred by the GP for a "vaginal lump".

    I went to the hospital a few weeks later, had an ultrasound, which showed nothing, then I went and saw the specialist. He asked me for some history on my problem, then said he wanted to do an internal. Straight away he found a large pollop which he cut out ( must have been what the GP found ) then we went back to his office to chat about possible treatments and solutions, what a relief!!

    He decided a lap would be the first step and then we'd go from there. I was put on a 3 month waiting list.

    A week before I got an appointment for my lap, I also got an appointment to have a lumbar injection in my back to relieve the pain. ( I'd been to see a new Dr at a different pain clinic, and he was shocked by the results of my MRI scan and knew I was suffering, so he wanted to book me in to the hospital for a lumbar injection, and eventually possible surgery if this didn't work). So 3 years down the line I had my back and lap done within a week of each other!!!

    The gynaecologist told me I had extensive endo which he cut out and burnt, also the endo had stuck my bowel to my womb, so that had to be separated, and also they drained some cysts. I also had the Mirena coil fitted as this would minimalise the bleeding when I had my period and also help control the endo.

    I have since had a period, and it was amazing, hardly any bleeding at all.

    I really hope you get some relief from your pain, the lap will identify all your problems and the gynaey will be able to deal with them and remove all the nasty stuff.

    I wish you well. Lisa xx

  • Hope you find the site useful, I can totally relate to some of your symptoms (although I am awaiting first gynaecologist appointment and hopefully a laparoscopy so no diagnosis yet). Particularly relate to the stuff about recurrent UTI-like symptoms - have had them pretty much constantly since November, no infection ever found through urinalysis tests and pelvic ultrasound/transvaginal ultrasound came back normal. Kept getting fobbed off with, for example, 'you're washing too much' (really? really that would cause so much pain?). Luckily I now have a wonderful GP who has referred me to a gynaecologist and seems more willing to join the dots - realising that the fact I have to take 8 tranexamic acid and 3 mefanamic acid every day during my period just to stop flooding/massive clots and fainting might have something to do with the other symptoms. Really hoping the gynaecologist will agree to the laparoscopy, I can't go on like this. I also want to have the mirena coil but a bit worried - they put a copper coil in last summer because hormonal treatments have tended not to agree with me, and I ended up in major injuries in A&E due to haemorrhaging and passing out at work, low blood pressure and hypothermia...gynaecologist on call there decided not to come downstairs to bother to see me, on the basis that 'it would settle down in a couple of months'. Presumably I was meant to take out shares in sanitary protection companies and sit with my head between my knees for 8 weeks or more...*rolls eyes*. Luckily the lovely junior doctor I saw did persuade a gynae nurse to come down and she gave me some tranexamic acid but no-one seems to have joined up the dots until recently...Hope you are on the way to where you need to be! x

  • Pain in the lower abdomen is common in endometriosis as is back and bowel pain. The fact that your ovary does not visualize may mean it is caught up in adhesions or stuck to the bowel because of endo or adhesions. Sciatic pain is also common for women with endo on the uterosacral ligaments, (felt on pelvic exam as nodules usuall), endo on the pelvic sidewalls where nerves travel thru the pelvis. I had sciatica, back, bowel and bladder pain for 22 yrs after my complete hyst until I figured out I may still have endometriosis. Trust yourself, your gp is wrong, the best approach is to have the endo lesions removed, excised not ablated. Likewise if you have a tender uterus, then post op birth control to suppress periods may be helpful. Mirena seems to get mixed reviews, some love it some hate it.

  • Hi all you special angels

    I think we all deserve a very big gentle hug at times when we are in so much pain and wonder if it will ever end and will anyone ever listen to us and give us the help we need!!!

    I give this poem to people who are in need of some comfort and support and you all deserve it!

    When angels sense you need them

    And angels always do

    They come unseen from everywhere

    To help and comfort you

    They hover close beside you

    Till all your cares are gone

    Till they can see you're ready

    Once again to carry on

    Then some of them fly away

    And take their gentle touch

    To other hearts that need the love

    Of angels very much

    But one at least stays with you

    As your constant friend and guide

    For guardian angels never leave you

    They are always by your side!

    Print it out and put it where you can get most comfort from it!

    Take care and angel blessings to you all xx

  • Where DO I begin?! Other than to say that your hideous, useless G.P. sounds pretty much like the one I used to have! Could even be the same person!

    This is just SUCH a familiar story, and that fact alone sickens me. When you are in pain, and feeling ill, and suffering from horrible symptoms, you need to feel that you will be listened to, understood and given the right care and support. NOT FOBBED OFF!

    I can imagine how frustrated you feel, on the one hand being given sensitive and supportive treatment by the Doctor at A&E, and on the other hand being overlooked by your G.P. - it sounds like for every step you take forwards (via good care), your G.P. then puts you firmly back at "square one" (via bad lack of care)!

    Now, here's the thing to remember... many G.P.s just do NOT seem to have the faintest idea about Endo! Many Doctors in general do not - so if you find a GOOD one that does understand, hang onto them! YOU, poor woman, are seeing the best of treatment AND the worst...

    Endo IS rather a frustrating illness, and it CAN be difficult to diagnose. It can cause all sorts of symptoms, some of which are very similar indeed to the symptoms of other illnesses - which is probably why so many Doctors miss Endo, and think it's something else! However, with symptoms like yours, Endo (and other Gynae diseases such as Adenomyosis or Pelvic Inflammatory Disorder, and PCOS) should always be considered. For more info on Endo symptoms, accoring to where in the body they are, see...

    Very few Doctors are knowledgeable enough about Endo to get it right. Often, it is important to be referred to an Endo Specialist, as you will get the right sort of treatment there (although even Endo Specialists vary in quality). The one thing to be aware of is that basic Gynaecologists are NOT specialists in Endo, and can still miss it. Endo can only be accurately diagnosed following LAPAROSCOPY, where a tiny camera is inserted into the abdomen in order to look for growths (even then, some Doctors can STILL miss it!). For more info on how to find an Endo Specialist Centre, see...

    Don't allow yourself to be put off, or made to feel silly by people such as your G.P. because the problem is with THEM, not you. There are far too many myths circulating about Endo, such as people being "too young" to have it, or "Endo is cured by pregnancy". I suspect that some G.P.s even believe some of these myths, which is why the give inappropriate advice and treatment. Others just do not know enough about Endo to be able to manage it effectively (if THIS sounds like YOUR own G.P. then it might be a good idea to think about MOVING - either to a different G.P. at the same surgery if this is possible, or to a completely new G.P. elsewhere!). You need to feel that you have support, and that the medical professionals responsible for your treatment care, and know what they are doing. For more on Endo myth-busting, see...

    It is GOOD NEWS to hear that you are booked in for a Lap. At least this is a chance to find out what is at the root of your symptoms, which may in turn enable you to start thinking carefully about a future treatment plan. Try not to be nervous about the surgery - having surgery is not pleasant (I know - after 4 surgeries!) - but the calmer you remain, the better your recovery prospects. Follow all instructions that the Hospital gives you, both BEFORE, and AFTER surgery, as these are written with the intention of ensuring a swift and complication-free recovery (not always the case, but at least you have to give yourself a chance).

    What you are doing with regard to noting patterns in your cycle and symptoms is a VERY good idea. I kept a symptom DIARY (in which I recorded all my symptoms - when, where, what, etc.), and I suggest that you might like to do the same. It can be very helpful at appointments - both in terms of showing patterns, and also to help you remember everything if you are nervous, or pushed for time.

    DO try to read up on things - it is YOUR body, so YOU need to stay in control of the treatment process, and make decisions about treatment options that SUIT YOU. It can help to become your own "Endo expert" - there is plenty of info on the Internet about symptoms, different types of treatment, side effects of treatment, and so forth. The more you are "clued up" and aware of your symptoms, and of your rights as a patient, the better - you can then more easily challenge incompetent medics, and secure the right care that you need and deserve.

    Try to enlist the help and support of family and friends at a time like this. The diagnosis process can be very frustrating and stressful (it took me YEARS to get an accurate diagnosis - many other ladies on this Forum will say the same) - you have to be FIRM and try to be CALM. It really does help to have support about you. For info on how to discuss Endo with family and friends, see...


    Hang on in there, and DON'T GIVE UP! There are many of us here who have had to listen to similar things to what you are hearing from your G.P. - Endo is NOT "in your head", and dreadful period pain is NOT "normal". If I had a pound for every time some insensitive person (including DOCTORS) have said things like that to me, I'd be a VERY RICH WOMAN! Stick by your gins - YOU know your own body!

    Wishing you all the very best - hoping your lap goes well.

    Good luck. Take care of yourself,

    Elaine. x

You may also like...