Undiagnosed endometriosis sufferer looking for advice

Hi, this is my first post so I'm not sure if I'm doing this right but I'm looking for some advice. A brief background of my condition starts at 17 when I first complained to my gp about suffering painful periods, they put me on the contraceptive pill which dealt with the issue somewhat for a while, however I've not been exempt to heavy bleeding and the pain remains pretty high. I was sent for my first scan at 18, which came back clear, I was assured that nothing was wrong and that this is something common. I was not suggested to take anything or prescribed any medication, instead I continued with the issue believing this was something I had to suffer with as a woman. At the age of 21 or 22 I went back to my gp again complaining about my pains, I was again sent for another scan which turned out to be an internal scan, which once again came back clear. It was only at this point that my doctor discussed with me endometriosis, which I had never heard of before. My doctors led me to believe that my scans would show if I had endometriosis (which I only discovered recently that it does not), she advised me that, when I reached the time when I wanted to have a baby, come back to my doctor if I hadn't conceived within a year. I'm now 24, the pain has reached its height, I suffer server period pains whilst on my period and whilst I'm ovulating, which is pretty much the majority of the month. It makes it impossible to move, I break down in tears most times because I cannot handle the pain, this has become challenging to my everyday life, particularly at work. I've gone to A&E only to be told there's nothing they can do. Within the year I've also developed crippling back pain which I never suffered with before, I read that this is a symptom of endometriosis and will just get worse. No painkillers work, at the beginning they have but after a few doses my body becomes immune. I've tried panamol, panadol, feminax , mefenamic acid (which I was only prescribed a few months ago). I'm horrified at the treatment I've received by doctors, I've been told that some people handle pain better than others and was even advised to changed my university degree (because apparently it wasn't good enough and that was the cause of my pain), I truly feel like I'm not been taken seriously. A few months ago I was referred to a gynocologist after I was again sent for a scan which came back clear (this was with a new gp). They took swabs and gave me a check and sent me off with the mefenamic acid, to see how I would go, they didn't work. Last week I went back to discuss the further plan of action. The gyno told me that I had two options, either have an IUD (coil) inserted or have investigator surgery to see if it is in fact endometriosis. The gyno may as well of told me to get the coil saying how fantastic it was and not giving me a balanced overview. She said that surgery would be pretty much useless as even if I have endometriosis, it would just come back if they removed it. I explained to her that I read it gets worse over time and decreases fertility, to which she said that loads of ladies who have it still have children. I'm 24 years old and have been suffering with this for 7 years with no explanation, I believe I have endometriosis but I'd like to have a solid medical answer. The hospital is really pushing for me to have a coil, which I'm not so open to. I really feel let down by them, I've been given two options and two weeks to consider which route to take, I was hoping someone could give me some advice? I left the appointment feeling very upset and emotional because I'm worried I won't be able to conceive. Sorry for the long message, hoping someone can help.

9 Replies

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  • Could you perhaps ask for both. I was diagnosed in 2011 during a lap in which it was planned they would insert the mirena whilst I was under GA. That way your agreeing to their treatment but you'll also know if you have endo. Also if you've never had kids getting the mirena inserted under general will save you the pain. Good luck.

  • Hi, I have been a sufferer since my late teens and am now 44yrs old and going through an the menopause.

    I had the Minerva coil fitted and I was in even more pain than before. It does depend on the stage of endometriosis I suppose. I was then told that I should take either a progesterone pill rather that estrogen one. As this would stop the ovulation, which in turn causes the most pain and the tissue to detach.

    It took 8 years of scans and mucking about with different contraception. In the end I was sent to see a specialist near to where I lived in a larger "city" hospital.

    I hate going for any procedures....... but if needs must, elect for exploratory surgery. At least it will be conclusive.

    As for meds.... the only one that worked for me was naproxen. It's an anti inflammatory and painkiller that works on reducing hormone inflamitrys and pain.

    I hope that this helps. Be strong and keep on pushing for a diagnosis.

    Helen

  • I'm really kind of sick of how much us woman have to push for some body to help us, these people work as doctors their supposed to be caring and compassionate listen to the patient and work with not against. ( don't get me wrong I rate the work they do) but it's stories like this what really get under my skin.

    I'm 32 I always knew something wasn't right with me I slept an awful lot extreme fatigue my periods started at 14 normal average age. But I always suffered with bad constipation crippling stomach pains. Same like you put on pill for HEAVY periods even put on Marina which was horrific I passed out and vomited in the clinic and was crippled for a week. Didn't help much either but gave it a shot for a couple of years had internals scans all clear. Never any follow ups so just lived with it. NEVER EVER HEARD OF ENDOMETRIOSIS despite all hospital stays over night and even heavy bleeding at hospital literally going through pads and clothes. Oh yeah and it runs in my family. NO ONE THOUGHT TO MENTION IT. fast forward 3 misscarriages and one child later. Horrendous pain like nothing iv had before. I Googled my pain it was ovulation searing pain then I came across ENDOMETRIOSIS. I couldn't believe what I was reading the last 18 years of my life I knew what was wrong with me. I started keeping a pain diary booked my self to see my gp and told them look at my notes since a teenager look at my problems late teens back pain fatigue pain constipation oh yeah then a week before was told ibs. I showed her my notes and told her this is what iv got. Before I went my mum confirmed my aunt who passed away had it and two of my cousins. I told the doc I believe this is what's wrong with me my heart was pounding this was major. Guess what she rolled her eyes at me and asked what do I want her to do. I said refer me to a specialist to get seen to. She said she'll have to do tests first then refer me as she'll look silly if she just does it. Long story short.

    I had one appointment with general gynae told them iv been this way for years and now since having my daughter I haven't been able to even conceive. 2 years not been on any birth control. They booked me in straight away for an investigative lap with potential to treat anything they feel confident with.

    Guess what 4 weeks ago today I had my lap they found endo burnt it off and found a huge piece of dense scar tissue from my belly button to my bowel they didn't go anywhere near it. It's huge and thick I seen it. I had a hsg and dye test my tubes are slow womb seems fine.

    Seen my normal gp who iv been dealing with for years who's said iv got depression from a teenager that hasn't been dealt with. Now he's said to me. You guide me whatever you want to do I'm happy for you to guide me. You decide what route you go. My decision is too try with the endo diet and get referred to a bsge centre because he now thinks the bleeding from bum ibs and dense scar tissue is caused by bowel endo.

    My point to you hun is. You know your own body you tell them what you want you don't need to get angry get emotional let them see how this affects you tell them you want the investigative lap maybe try the coil it might help. But once you've got a solid diagnoses then you can take it from there. Ask them were they are going to look ask lots of questions and make sure if you decide to get the lap that you request, before the lap takes place you want a copy of all pics the full surgery report and pathology. Just in case you need to seek a second opinion. Or if you can go and pay an endo specialist for an initial consultation and speak to them get them to put you on their nhs waiting list and let them do the lap. Sometimes general gynaes miss endo.

    Don't give up hun be firm you know your own body and don't be fobbed off.

    If you ever need advice. The ladies on here are great they've been there done it and know so much about this disease they just get it.

    Hope you get some answers soon hun

    Xx

  • Oh honey, you really have had the run-a-round! I do think in this country it is so hard to get an answer! Or just to see a gynaecologist! In the USA we would just go directly to one, and skip the GP when gynae issues present. If I was you I would have the lap. It really is the best way to find endo. And you do really need to know. From there you could op for the hormone coil. I am sorry you are suffering so much at what should be the best years of your life! Hug!

  • I would advise you to go straight to a endo specialist. I've just last week had my first laparoscapy, it with NHS gynaecologist who just drained a cyst and told me my uterus looks fine, no endo, also he didnt explore any further, ie bowels etc. The other NHS consultant I had met with told me they'd also test my fertility with dye in my tubes but he didn't do this either, so I woke from surgery rather frustrated.

    I have the symptoms of endo in several areas, and my GP and consultants after my scans are convinced that's what it is, I'm still in pain now, so I wish I'd seen a surgeon who knew what he's looking for as I'm now facing another lap with specialist to get some answers.

    Good luck!

  • I'm in exactly same position, I went Gynae on 1st Feb with almost all the symptoms you describe, she sent me for a scan on 10th March and told me she'd see me back in clinic on 26th April and in the meantime I've got to think whether I want surgery or medicating. Like you, she was pushing me into medication but I'm not going for that, I'm definitely going for surgery. You should too. Medication only numbs the symptoms for so long, if at all that is. Surgery is more successful, the chance of it coming back is there but it's got to be better to have surgery to remove it and recover then to have medication or coil chucked at you to manage your symptoms. Hope whatever you choose to do, it works out for you. Good luck xxxx

  • Hey I'm in a similar boat trying to get diagnosed. Its really hard I feel your pain, I wasn't even offered either of those. I was put on the pill and told to take 2 packets and then 7 day break for 3 lots. I was also told that they didn't like to do surgery as this can cause more scar tissue which I understand to a degree but I may need surgery to help with having children and to actually diagnose me etc. She even told me to push our wedding forward and have children quicker as this will help!! I wasn't impressed as I'd done some research before hand and know that it will only mask symptoms and they are often worse after but I wasn't getting anywhere so took the prescription and left said i'd try it and see and then go back at least I'd have given it a go. She was the 3rd doctor I seen at the clinic as the other 2 male doctors dismissed it,one even told me that where my pain was was not where my womb was!!

    The Pill hasn't helped at all so I've made an appointment to go back to get referred and I wont leave until she does.

    If it was me I would do as suggested by tmc182 and do both I think its worth getting the laparoscopy to give you a definitive diagnosis and you can determine where you stand fertility wise etc.

    I hope you get on ok with it all. x

  • I have had consistent back pain, which I have always thought was kidney pain. I have been suffering from this pain for over 7 years now. In my first investigations into endomitriosis I was assured that surgery would diminish my pain, or get rid of it. The laporoscopy, having removed endometriosis tissue, as well as ovarian cysts has not helped with the pain. I am not saying that surgery will not help, but rather that if you are having pain that is local to areas other than your uterus and pelvic areas, be concious and vocal about it. If you have endometriosis build up in other areas, a gynecologist can speculate, but chances are help from another doctor is necessary. I am still trying to get that help, as I believe that I have endomitrial build up that is still unaddressed. I wish that I had asked for a gastro or renal referral years ago. Why are endomitriosis patients still awaiting a system that calls for differential diagnosis? Advocate for yourself. Best wishes.

  • Please please please please have to surgery done.

    It does work and most ladies with Endo will tell you that. Yes it will come back but it is the best solution out there. Iv just had my third Lapraroscopy. Iv had 2 where they have burnt it away and one 2 days ago where they cut it out. 2 days after surgery and I am honestly in agony, can't move, stand, walk, sit, lay down nothing without pain BUT the pain goes! 12 hours after surgery my hormone levels were normal ( they haven't been for 2 years) and I'm slowly starting to feel human again. In 6-8 weeks time I know I will be pain free.

    The Endo isn't going to go away unless you have it removed. Other treatments can improve the symptoms but only surgery will remove it and give you relief. Your better off having it done, then going on the mini pill or coil ( to stop you bleeding) until you want to start a family.

    Hope this helps. Lv Ally xxx

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