Hi all! So this is the first time I've ever used a forum for anything but I just feel at a total loss/frustrated/angry like a lot of you probably do too.
Like everyone, for years I have totally suffered (there's no other word for it) with the same symptoms, although have definitely got worse over the last 5 years. I don't remember the last time I didn't feel tired or exhausted or a day without some form of pain. Of course this affects your mood but I do try to push myself a lot because otherwise I'd be inside with the hot water bottle all day every day!
I won't give you a massive history but I just turned 30 in September and just prior to that I had my first appointment with gynae (at a hospital with a specialist team), this was after years of "its IBS" etc, I finally changed Gp and they said "have you heard of endometriosis?" And referred me there and then. I was seen by a dr in May, I was in tears in and after the appointment, which really isn't like me, but he made me feel stupid and as though it was in my head or that I was making it more dramatic than it was and in hindsight I wish I had asked for someone else for the internal after he made me feel like that. It was an awful appointment and I was also made to feel as if he was only organising a laparoscopy because I pushed for it because it "was unlikely" that I had it.
I had the laparoscopy on 1st September - they said if they found anything they would remove it. When they were in there they found some active endometriosis but a lot of inactive endometriosis which has left scar tissue surrounding my left ovary and tube and some other bits and bobs, as in it's completely white! So he said he wanted to refer back to the endo team to consult with them. I never did hear back, so it was back to my Gp and chasing from them, and I've finally got an apother appointment with the team at the end of May - turns out I should have been seen within 3 months of my lap but it just didn't happen.
Anyways - while it sounds ok that now I've got the appointment, I'm already getting nervous in case it is the same dr who feels he needs to "dumb down" questions for me. He actually sighed, closed his eyes and said "let me make this simpler for you" because he was asking me to describe the pain. How do you tell someone more clearly that you're in constant pain and that sometimes it becomes so extreme you're sweating and doubled over, my hips and lower back and tops of my thighs are aching etc. I am on amitriptyline for pain relief, maximum dose of cocodamol and diclofenac 3 times a day.
So after this long winded ramble, I wonder if anyone has any advice to get my point across or to make sure something actually happens. They inserted the coil while I was under the GA and if anything I'm more tired and the pains are worse. I don't even know what to expect from them because so far what I've experienced has been so poor. I'm actually a nurse myself and would never treat anyone in this way!
That sounds terribly patronising, especially as you are clinically trained!
I started to keep a structured symptoms diary with a point scoring system to get the message across in a more "scientific" way which seems to have helped. The Endo UK preparing for a consultation download has a 0-10 pain points scoring system you can use
My issues are wider than pain and I recently did a symptom summary table with a 0-7 system and a heat map to show my overall downward trend. Here it is as a word document
Starry, I've had a look at your Word doc and (particularly) your emotional health/feelings of inability to cope seem to have worsened since having the Mirena. Have you considered having it removed? I only ask because in your 'now' column you're describing very similar things to how I felt with the Mirena. I've just had mine removed xxx
Thanks Janine, i had been about to actually but the zoladex i wanted to move to instead is utterly horrific in every way so i cancelled the appointment temporarily as coil is lesser evil and had already stopped my periods. Surgeon is very keen i keep something to suppress endo as it's a deep nodule attached to my bowel and he doesn't want it to infiltrate.
I'm definitely not coping but i think that is more to do with the exhaustion level and work stress in a stupidly demanding role compounded by zoladex making me sicker and worrying about the next surgery which is very high risk. I put in a reduced hours adjustment request this week, which was accepted by my employer so i will be on a 4 day week soon.
I would specifically request not to see that Consultant again. Is he an endo specialist? If not (and even maybe if he is) there's no benefit in seeing him at all as he made you feel so terrible xxx
Thanks @janine33 and @starry - sorry for the delay, my dad passed away and have been managing all that brings.
I didn't see that same dr again thank goodness. However!!! I had endometriosis diagnosed as I said. I then returned to the clinic - this is the registered endo specialist clinic btw. They said at first it wasn't endo and I got a bit confused and said I was told it was so then she said "oh it is" but they're referring me on to the chronic pain management team who may or may not remove it?! It was so far away from what I thought they were going to say. There's no consistency within the team so no one knows what you said last time and no one knows you or what you have. I'm now on a waiting list for this team - I waited two years to see the gastro team so not holding out any hope that the appointment will be soon. She said she could see I was upset and I said well it's like after my surgery they said nothing but told my gp they found endo, now you're saying it's inactive (causing all the scarring on my left side where I get most but not all of the pain) but there might be some active in there too and that really you're doing nothing about it and now I have to wait for this new team to explain everything all over again for the millionth time I'm sick of struggling. She came across as very sympathetic and said she was sure i had numerous people telling me all different things and the pain management team will provide a joint working approach with surgeons etc but there was almost this feeling of her wanting to get me out of there as soon as possible and wasn't really interested. I know they're stuck for time but I get so upset at my appointments trying to put into words the effect that it has every day on me, I take my partner and he steps in if I can't. I have started to keep a diary of not only physical but mental symptoms as I get very anxious when I can feel the pain coming on and about how bad it's going to get and if I can walk properly etc. I've had a lot of down days recently which are understandable due to the current situation and what not but even before then I'm just so fed up and feel angry that people are just brushed aside like the fact it's stopping any happiness or social opportunities doesn't matter. I'm going to write a letter to them as I think I can write it better than I say it (don't judge me on this ramble haha) because when I get upset I either can't or won't speak. One day I'll get there 🙌🏻
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