First post - bit of a hello and a bit of a ramble!

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!

Thanks for reading if you made it to the end!

4 Replies

  • 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

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