Suspected Endometriosis

Hi there,

My heads in a bit of a spin after two trips to Hospital this week and having been poked and prodded throughout numerous tests to try to work out what's causing my pain.

I've had pain for the last 6 months or so, seemingly cyclical, always in the left side of my lower abdomen and it has been getting pregressively worse each month until this month when the stabbing comes it practically cripples me.

The pain was initially a feeling of fullness/pressure and I originally thought it might be bowel related as I have a food intolerance that is fairly tricky to avoid, although the pain is different. However I then started to get short, sharp stabbing/pulling pains with it sporadically, like something was attacking me deep inside. Bowels and everything were working fine so just put it down to some weird pain cause by my copper coil (it causes a lot of pain any way) Last month the pain got so bad one morning when driving to work I had to pull the car over until it passed, by the time I could get a doctors appointment my Period had come and the pain subsided.

This month however the pain is off the charts. It's been 9days today and the pain has been getting stronger. I'm on morphine and that's not even touching it. They've checked for contorsion of ovary, cysts, infection etc and all negative. They're now thinking Endometriosis but say not sure as my pain hasnt seemed to increase the first few days of my Period. we'll today is day two of my Period and it's been the worst yet, I've spent most of the day in bed on morphine and can't get comfortable or sleep because it's so bad.

Also the last few days I've started to get additional pain up towards my left ribs, not stabbing, more like a tightening. Then also a prickling/fizzing feeling across the middle of my lower abdomen.

My periods have been really heavy for a while now but again I put this down to the coil. I've also been exhausted for months now but had put it down to work stress.

Now I look back I can see that everything my be connected to this and the more I read about endo the more I'm beginning to think it could be.

Does anyone have any tips on dealing with doctors? So far mine are making me feel like I should just go home, take the painkillers and shut up. I've already started keeping a diary since I was admitted to Hospital but any other suggestions welcome.

Sorry for jabbering... foggy head.

TIA

8 Replies

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  • hey, I am so so sorry to hear about your pain. I would suggest that you insist your doctor refers you to a gynaecologist. For treatment of endometrioses properly you need to go to a BGSE centre, so in case it is I would recommend requesting a referral to there just in case. You can look up BGSE centres om the internet and find the nearest one to you and then request that your doctor sends you to that one. They will then write a letter to them for a referral. I hope this helps and I hope you get a diagnosis soon and then you can begin to start some sort of treatment rather than just medicating and dealing with the pain 😞 Take care and look after yourself xx

  • Hi thanks for your reply. I have been referred to a gynae just waiting on an appointment. I'll mention to my GP about the BGSE centre and see what she says. The consultant at the Hospital has written a very detailed report recommending endo investigation so hopefully eventually I'll see the right people.

  • Have they asked for a gynae to come and speak with you? If not, it might be worth asking them to do this. Other than that, at this point, there is little they can do other than try and help you manage your pain to a point where you can cope at home. You need surgery to diagnose endo and they can't do that immediately unless your condition becomes life threatening. The problem for the hospital is that you are taking up a bed which may be needed by someone else - for example there may have been someone who had their surgery cancelled because you have taken the bed that was intended for them - and they can't justify surgery unless it's an emergency, again because this would mean cancelling surgery for someone else who may have been waiting months to have it (I had surgery last tuesday that I had waited almost 6 months for - I was told when I arrived that there was a possibility it would be cancelled because there was no bed available. I cried in the waiting room. The consultant thankfully did the surgery anyway but I then spent 6 hours hogging a bed in recovery before they could find me a bed on the ward.)

    The next step once you are home is to see your GP and get yourself referred to a gynae, preferably a BSGE centre (google this, there's a list, they are specialist endo clinics) and see what the GP can do for you in the meantime with regards to pain management. Assuming it is endo, there are hormone treatments the GP can give you such as the mirena coil and the progesterone only pill as well as sorting you out with a decent regime of pain relief.

    hope you feel better soon.

  • Thanks for your reply. I'm out of Hospital and wasn't taking up a bed as both times I was sitting in waiting rooms, last visit was in a waiting room being treated for pain via IV for 27 hours. I get the hospitals are struggling for beds and I would not have gone there if I hadn't been referred by my GP as she didn't know what was causing it. Had she have known what was causing the pain and that it wasn't critical then I agree she could have just given me pain meds, made appropriate referrals and avoided the trips to the Hospital. At that point though none of us knew what was causing it.

    I did see a gynae, who ran various tests, examined me and sent me for an Ultrasound. Also was examined by a surgeon to ruled out it being bowel problems. Both ruled out anything needing immediate action, drastically upped my pain meds and said they suspect endo but would need further investigation.

    I went back to my GP who referred me to pelvic pain clinic as per the Consultants recommendation, they don't have any appointments so I'm waiting for them to contact me.

    I just want to be doing all I can to 1, manage the pain and 2, get some sort of understanding of what's going on. My GP seems to want me to tell her what to do but I have absolutely no idea as this wasn't something I knew anything about until a few days ago.

    There are people much worse off than me, I know that but I need to be doing something about it. I need to work and right now I can't because of the pain.

    Sorry to rant, I'm probably making no sense at all, I can't even think straight, the pain is off the scale this morning, the pain meds aren't touching it, I've had no sleep, could pee for England and my Period seems to be about a years worth in one go (Sorry to be gross).

    Think I need to go shut myself in a cupboard somewhere.

  • No, I totally understand. I've been there. Hours sat on a plastic chair in a waiting room in agony, usually at the gynae clinic with the pregnant women and the toddlers running around as you try to lie down on the seats (because there's no where else to lie down) and try not to puke, and the receptionists get pissed off when you tell them you need pain relief. I'm sorry - I assumed from what you said that'd you'd been admitted but obviously that's not the case.

    If your GP is being useless you have the right to see another one - I had dreadful problems with a GP at my surgery who told me rectal bleeding was IBS and told me I didn't have the symptoms of endo when I asked about it, the twit. Sadly some GP's are more clued up about this than others.

    What you need in the first instance is a referral to gynae so that you can have a laparoscopy so they can see if it is endo (and this is not the pain clinic). Your GP can give you an assortment of pain meds to use at home - I have mefenamic acid, diclofenac suppositories, codeine, cocodamol, tramadol, paracetamol and ibuprofen and mix and match these as needed. They can also sort out hormonal contraception which can help reduce pain. If it is at all possible to get back to your dr's surgery and see someone else (they may have a gp or a nurse who specialises in female health) then I would recommend it. If you find yourself unable to manage at home and things are getting out of hand then calling an ambulance and being taken to A&E is completely justified.

    hope things improve soon. x.

  • Sorry to hear you had a battle on your hands GP wise to but thank you, I appreciate the advise. I will go back to Doctors Surgury and see if there's someone who's better clued up on womens health and make sure they are referring me to a gynae. Will also see if they can offer me some other options for pain relief. If I can manage the pain enough to be able to maintain some sort normality I can cope with waiting for answers but I can't carry on for prolonged periods like this. My husband (being squeamish about womens issues and used to me being busy and independent) thinks I'm losing it! lol!

    Thanks again xx

  • Hang in there, and don't take no for an answer. X

  • Thank you. A good time to use my stubborness to it's full potential it seems. :)

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