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Post by cherry on Feb 1, 2007 6:12:54 GMT -5
Ok I'm really stuck, and think I'm putting myself across the wrong way when I speak to doctors. I was discharged from my gynae outpatients cos my consultant said the hormone treatment I had would have 'cured' my endo, in that it was only spots (not the adhesions he told my GP about) and they would have disappeared. Because I pressed on the pain issue, he at first refused to give any diagnosis on what it could be (not my area he says); then when he suggested it was IBS (despite me insisting I have healthy bowel habits) I refused the meds cos I'm sick of putting crappy meds into my body after such a bad time on the prostap 3, esp for something that was probably unnecessary. I was discharged anyway despite asking for a further lap (it's too soon after my last in Feb 2006) and my GP has looked into IBS and renal problems (u/sound on bladder and kidneys, urine sample tested) and has finally referred me back to another gynae. I'm just waiting for my appointment now. I can't get any stronger painkillers than I'm on as I can't take opioids. The GP suggested paracetamol (I was a bit gobsmacked, plus they also make me sick) but basically shrugged and said there was nothing else. Between my current painkillers and my TeNS the pain is manageable, but on my first 'definitely endo' period last month I felt like I hadn't taken painkillers at all and I'm in tears with the different pains all over again. I just can't seem to convey this when I get the all important appointments though. If I'm not in much pain at the time I'm so happy i forget what to say. Or I don't express it properly cos i don't seem to be taken seriously at all. I'm just nervous cos it's like when you see the doctor you have one shot at convincing them you need their full attenttion, and their help. Since I was diagnosed I've been under a little cloud, not quite depression but I feel so frustrated and hopeless sometimes, other things get to me more easily cos this is always on my mind. The pain scares me, it makes me cry at least twice a week, can make me dizzy and throw up or feel the need to dump everything out of my bowel and bladder. If it's not endo or IBS, what is it that's hurting so bad. I'm actually pretty worried what it could be now. I grimace when someone hugs me (usually my favourite pastime, hugging) which is really upsetting... I can't even describe it properly on here. I don't know if I'm just jaded by the whole experience since I was diagnosed, which was only last May. I know it made me very suspicious of doctors and what they can't be bothered doing. It just seems that even though I know I have endo, I'm back to square one with the pain. The ultrasound found no fibroids or anything and with them refusing a lap at the moment, I'm really stuck. This will be my 5th consultant since I was 14, and it was only with my 4th that they looked into things a bit and found a possible cause. ( I was first sent to the gynae cos of torrential periods and bad clotting, but the last one was cos of the worsening pains) Would appreciate any advice, can't work out whether I'm ranting or asking for tips xx
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Post by ouchy on Feb 1, 2007 9:54:59 GMT -5
Hi, "MOTM!" <---Member of the Month!!! Sorry you are going through this! I know EXACTLY how you feel. While my gynecologist doesn't deny that it is the endo back, as it usually always will come back in any woman, he says that it is too early to perform another lap bc of all the scar tissue that forms after each subsequent lap. Shockingly, this last time was also the first time he recommended Lupron, and I'm NOT doing that! IBS seems to be the catch-all diagnosis for people w/ endo. I think a LOT of us were first dx'd w/ IBS before endo, and if it's not endo now directly, it's the endo causing the IBS...yada, yada, yada. Whatever it really is (endo in my guess!!!), it's a pain in the arse! I guess my only advice would be natural treatment options? You could try psyllium husk for the bowel problems and maybe try diet modification and see if that helps a bit? Also, a couple of us have been helped by black cohosh. I guess just search the boards for tips. Good luck! And congrats, again, MOTM!
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apple
Full Member
Posts: 214
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Post by apple on Feb 1, 2007 10:21:08 GMT -5
Sorry you are in so much pain and frustration. I've been through that route of going and coming from doctor's offices. Full of expectations and so frustrated. My advise is to take the "bull by the horns". Taking a total charge of my health has helped me. I suggest you to search "Alternative Treatment" section, there a LOT of useful info there and you may want to try some of those approaches. I guess not everything works for everyone but with this illness my personal opinion and experience tell me that is it a 95% of your part and maybe 5% of doctors. Hope this helps.
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Post by camille on Feb 1, 2007 10:31:24 GMT -5
I am so sorry for your frustration. I think we can all relate. Shortly after my surgery last Fall I began to get in touch with some (ok a lot) of anger that I didn't know was there from years of being ignored by doctors and subsequently myself. I had a (male) friend tell me that I should feel grateful that I had surgery at all and I wanted to punch him in the mouth - it doesn't take away the abuse, really, of doctors not taking the time to listen and care, even if they can't do anything about it. I am sad and angry for all the years I have spent in pain. And the first time I read all of the stories on this website i just cried, knowing that I wasn't alone and that so many women suffer in silence. I agree with Apple, check out the alternative posts, it has worked wonders in my life. Not just with pain relief, but with all of these emotions that come with or from this disease. I have read a lot of posts on this site saying that with or without diagnoses, we do know what is going on inside our bodies and while it did help me to have a definitive name and location, I really didn't learn anything new from my doctors. My acupuncturist and therapist on the other hand have opened up a whole new world of healing for me. I wish you the best.
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Post by akcheryl on Feb 1, 2007 13:22:38 GMT -5
I know this won't help immediately, but maybe to assist in getting your point across to your medical providers you could keep a detailed daily journal of your pain. Include pain ratings, 1-10, just like they do at the doctor's office. You might also want to include an outline of the human body and circle any areas that are in pain each day, and write down exactly what the pain feels like (stabbing, pulling, burning, pressure, pins & needles, etc). That way, you can clearly express to your doctor how often and when you are in pain, what degree of pain you feel, the variations in your pain, etc. Also, saying how the pain feels (descriptive words like "stabbing") can help clue the doctor in to a diagnosis. Keep a copy of this journal for yourself, and give your doctors copies. That way, you won't be pressured to remember what you felt like on certain days, which is nearly impossible for most of us.
Also, whenever you go to a doctor, ask for copies of your medical records. Keep a full copy of your medical records from every medical provider you see, and that way you know:
1) Exactly what your doctors are writing about you. I work with medical records every day, and there are good things and bad things said about patients. Doctors often write down their impression of the patient, whether they think they are malingering ("faking" their pain), drug-seeking, etc.
2) Doctors are humans too, and are fallible. Sometimes they misspeak, just like the rest of us. If you have your medical records, you can see your lab results, etc. and can rely on what was written down, rather than what was said (that way you also won't have to remember everything).
3) You will also be able to give copies of your past records to new providers. People often forget what tests they've had performed, what dates, etc., and your medical records will give new providers an accurate detailing of your history.
Also keep copies of your prescriptions. Lately, I've been keeping a list of my meds, the date they were prescribed, dosage, prescribing doctor/facility, how many refills I have left, etc.
Finally, get a detailed family medical history. For each member of your family (siblings, parents, grandparents, aunts, uncles and cousins), write down their date of birth and date of death (if they are deceased). Also list any diseases they suffered from. Nothing is too small. Also try to include the severity of the disease and any operations/procedures they underwent. This can help give an idea about genetic diseases (and endo has been linked to family inheritance). Try to be as accurate as you can.
I hope doing these things helps. If anything, keeping accurate records can help you know that you're taking a proactive role in your healthcare, and I think that it reflects your dedication to your doctors and they'll understand how serious you are. I know that doing these things has made me feel a lot more in control.
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Post by angelas on Feb 1, 2007 17:04:43 GMT -5
Hi Cherry! Have a look at my posting under the rant and rave section... you and I are in the same boat.... I'm going to have to read on the advice of the rest of the ladies on here since I have no idea how to handle my situations either... it just seems that the moment you do stand up for yourself in explaining your issues, the longer you wait in PAIN for another person to look at you... I'm not trying to bring you down, I am only saying I totally feel all the things you just talked about. I am here for you though... sometimes the best thing is to bounce ideas off each other..
ange
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Post by cherry on Feb 2, 2007 13:53:21 GMT -5
Wow thanks for all the input everyone! I am definitely into alternative stuff, I found a clinic near mine the other day and I have already started with all the back to basics eating and taking vits. They have helped me feel a whole lot healthier. I find that taking out my frustration at the gym helps, and although exercise kicks off the stabbing and aching pains on my left, it has helped me learn more about my body and the nature of my pain, just by working through it rather than jumping off the treamill as soon as the pain starts. The anger about everything makes me feel worse, I get into a huge gloom about everything whenever I saw the last consultant cos he showed such a huge lack of interest. I think it's just very hurtful when someone you trust enough to tell your most intimate thoughts to starts rolling their eyes and rushing you out. But I hold out faith still for the doctor who listens and shows they care, cos you get that every so often, and that's the only reason I still continue with medical treatment. Does anyone know if you are able to get alternative treatment on the NHS in the UK? Or is it self financed. I really love the support on here, and value your input enormously thank you xx
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Post by scarlett on Feb 2, 2007 15:27:19 GMT -5
I really feel for you. Although I've had a definite diagnosis and everything, I have definitely had the experience of sort of forgetting what I meant to say and being rushed out of doctors' rooms - it's like some weird trance comes over me! To get over that I've started writing down a list of questions in the few days before an appointment and literally getting them out and going through them in front of the doctor. At first I felt kind of embarassed, but now I don't care, after all one way or another I've paid for their time and they are providing us a service. It helps to make sure you get all your questions answered. It's bizarre how different doctors say different things. The surgeon who performed my 2nd lap said I had only a low chance of conceiving and I should go straight to IVF, however when I went back to my IVF dr, who also performed my 1st lap, she said I had some chance and should keep trying myself. The first guy thought the chemical effects of endo would rule out natural conception, the second thought it didn't matter so much - so who knows!! I think they both mean well but there just isn't enough evidence either way to say for sure - not much help to us though! I'm not sure whether you can get alternative treatments on the NHS, although I just found out my insurer may pay for acupuncture which is good news. I think i have heard something about getting alternative treatments on the NHS though, so you should ask your GP. If I find out any more I'll let you know. Your description of your pain is so close to mine it's scary, although luckily it hasn't been that bad for a few months for me. I wish you all the best and hope you have better experiences and some answers very soon.
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