Hi everyone, had my first gynae appointment today with a consultant, I'm not going to lie I had worked my self up with excitement hoping she'll have answers or at the very least a plan of action that will help get this pain under control. I had been made aware from another gynae doc at my last A&E visit that she was a bladder specialist & will definitely address my urination symptoms, but also that he thought the next appropriate step would be a explorative lap and would let her know.
The outcome of the appointment was to keep a food, bowel, urine & pain diary for the next 3 months, to come off my contraceptive pill entirely & start courses of an antibiotics to reduce the amount of bladder/urine infections I have had. It may sound childish & pathetic but I didn't quite expect how much I'd be disappointed & upset with after waiting 5 months for an appointment that they couldn't have asked me to do the diary whilst I was waiting.
I completely broke down in front of the consultant which forced her hand to assess my pelvic area, which she wasn't going to do.
Everyone I've spoke to has said just ride it out and it's a long waiting game to get even a diagnosis or just do what the doctor says they've got to eliminate things. I feel as if she focused more on the 2 urine infections I've had than the fact I've been taking such strong pain killers for this pain & had a summer literally of just being in and out of hospital. I feel like I wasn't listened to properly & shes fobbed me off for another 3 months.
Anyone else had a similar experience or am I just overeating? 😒😒
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Lucewhyte
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Yes, my 1st period was when I was 8 and I was misdiagnosed with Acid reflux, IBS, hypochondria, and appendicitis 5 times all which were ruled out after further testing. I was told to live with it and I did all the way till 16 and then the heavy bleeding started and my doctor put me on the pill after Naproxen didn't help. The pill made beryfhing worse and I got a kidney stone so I was sent to a gyn.
The gyn told me I had endometriosis judging by my medical history and that I would need to use nuvaring ring for 3 months before she would do anything, I had an allergic reaction and got loloestrin. After a super migraine the 1st time taking it I didn't see her till July and went to see other doctors. They referred me to a partial Endo speacilist who I'm awaiting to see on Halloween.
The gyn in July put me on a progesterone only pill which I take all the time back to back, I got a kidney infection and PID from it and for the 4th apt with her I begged for a lap, but she refused and said "It'll get better" and that when I asked for pelvic floor Physiotherapy I was young and healthy so I wouldn't need it.
I'm 17 and am awaiting diagnosis, I have a confirmed case of pelvic floor dysfunction related to endometriosis.
It's all a waiting game, they make you try things and you do so it shows your willing. What I've found works best is if you bring a heating pad to the apt and show them what painkillers your taking, something tends to click the minute they feel how hot your abdomen is.
Our stories are quite similar. I've had my appendix out now as they thought that was the cause of my pain but it wasn't. The appendix was fine but they did find a ruptured cyst, which made me suspicious of endo.
But I was quite late to start my periods I think I was 13/14, and they were so heavy and painful by 15 I was on the contraceptive pill and been on it for 6 years now. However I began to become photosensitive and I was diagnosed with oestrogen drug induced photosensitity. So now I take the progesterone only pill, but the doc said to come off it completely and see how the periods are now & how the pain is near ovulation.
I also have fibromyalgia and take naproxen everyday along with omerapozle. But since this pain started I've gone from codeine, to morphine & ended up on tramadol. Luckily I've weened myself off it as it's not a drug you should take long term but the gynae I saw yday had no issue with me taking it.
I don't want to have to ask for a lap as the key hole surgery I had for my appendix was dreadful but it just seems nothing productive is being done.
I hope you get your answers soon & it's unfortunate there are many of us in this situation but at least we have each other to talk to and understand each other! X
Endometriosis can only be treated with surgery, they need to remove the tissue from your abdomen or the pain won't go down. You've been on a hormonal contraceptive, you know it doesn't help so any treatment they give you won't help. Endometriosis cant go away by just being on the pill, lack of menstraution causes the tissue to not grow but any tissue that's already there stays.
The doctors in A&E keep saying I'm too young to have it (17).
The only doctors who know anything about this disease are Gynaecologists (slightly) and endo specialists.
This is an endometriosis forum so unless if you think you have it or you've been laproscopically diagnosed we can't offer you help, some of us may know other illness names though.
We aren't doctors and even if we were we can't diagnosis you online because we don't know your medical history and because a physical examination is needed.
The only thing I can say if you want the pain gone and you aren't willing to do surgery is to go to pain management clinic.
If you think it's bladder related here's a illness that's can cause bladder issues: interstitial cystitis.
Yes i have!! 14 months of agony!! Before i even got a scan etc!! Bowel wall damaged through radiation treatment years ago! & s thickening of bowel wall.no treatment!! To much nerve damage!! Live in such pain sometimes.o have to take myself to A&E!! The vaginal wall is no better either.hope you get some treatment.xx
I totally understand how you feel. i have always had horrid pains during the week of my periods but in the last 5-6 years it has increased to the point of consuming my entire life. Before i started making rounds of hospitals and therapists, i naively used to think that once i see the right specialist, they will sort it all out for me. How wrong i was 😔😔. I am still searching for something that will help me after 4+ years and feel so disillusioned and disappointed with the medical system. But we dont have a choice, we have to do what they ask us to show willingness. Please maintain the diary, and also a general symptom diary with all the extra information you can think of, including the number of painkillers you are taking everyday. Be prepared on your next visit so that they cannot send you back with something else. Like Hannah said, take a hot water bottle or heating pad to the appointment so that they know how much you are suffering. Research your condition and make a list so that you know what questions to ask on your next visit. Since you are really young, i hope and feel that your wait will not be a tolkienesque journey like mine, i am much older and also dealing with lot of ferility and other issues that come with age and endometriosis. I know it sucks to wait another 3 months but stressing about it is only going to make it worse. Good luck.
Hi, I think that's what happened to me too, getting hopeful about seeing speacialists. Yeah I'll do the diary and follow what she wants me to do, that's a good idea to add in the medication and symptoms. I think that's what frustrates me so much I am so young & it affects your life so much. I hope you well along your journey too & hope you find some answers! Good luck to you too xx
I am feeling your frustration. I had my first gyne app yesterday. I feel like I was fobbed off too. He said he suspects endo but it wouldn't be that bad as I have no cysts on my ovaries and the wall of my womb looked fine on a scan I had done a few months ago. I am to go back to him in a few weeks or so and have a coil fitted as it will stop further bleeding and therefor sort everything out! I wanted to do two things! One punch him in the face, -and two cry! I suffered ever since I started my periods. Having listened to advise people seem to think the current pain I have won't go away as endo will still be there until it is removed via lap etc. So at the moment I am going to have the coil fitted and if my pain does not go away then I shall ask for the lap to know for sure what on earth is going on.
I really hope you get answers soon . I feel like my life is in limbo at the moment. And I feel another year of being basically told to get in with it coming up. I feel there are many hoops to jump through I am just hoping the coil does help! But I am dreading having it! 😬 Keep going brave lady xxx
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