Feeling a little bit lost: Hi all. First... - Endometriosis UK

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Feeling a little bit lost

Bookobssessed profile image
7 Replies

Hi all. First time posting and I'm not really sure what I want to get out of this post I just feel so lost and confused. I have been living with fibromyalgia for 3 years diagnosed but probably for many years previous so chronic pain is no new thing for me. I went on the hormonal coil in January 2020 so have irregular periods that are more spotting. In August 2020 I became to experience serve pain in the lower back, abdomen, pelvic and hip that varies from constant pain and this like rolling pain. It can happen through the month but I found happens quite often at the end of the month/beginning of the next month. I have multiple tests and scans and was advised to see a gynaecologist which I was put on the waiting list in June 2021. I wait months to hear something and was then told because of the pandemic I was on a waiting list and they couldn't tell me how long I would be waiting to see a doctor. So i decided to go private I've seen a consultant and she is willing to do a laparoscopy to find out if it is endometriosis, but I felt during the consultation that she wasn't confident that it was endometriosis she seemed very vague about things and just kept asking why I thought it was endometriosis (My referral from the GP suggested that what he thought it was). I felt almost like she kind of thought well it could be so will do the surgery as it what the patient things it is and that one more thing we can cross of the list. I've received the quote for the operation and its a lot of money that means I would have to take from other needs. Her lack of confidence/ guidance has left me hesitant as whether to go through with the surgery especially as she has suggest it could also be IBS. I'm also really anxious about the surgery causing a fibro flare up.

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7 Replies
Brid04 profile image
Brid04

I’ve read that endometriosis can only be diagnosed properly by a laparoscopic investigation, I hope that’s helpful, hope you get some answers soon. Xx

Bookobssessed profile image
Bookobssessed in reply to Brid04

That was what the consultant said. It was just the consultation left me feeling like she only doing the surgery to kind of stop me thinking it endometriosis and she doesn't truely believe that what it could be. I think I will probably just have to go for it but just very anxious about it all at the moment.

Brid04 profile image
Brid04 in reply to Bookobssessed

Try not to be anxious best that they investigate and find out what’s wrong. The alternative living with horrible cyclical symptoms isn’t worth the short term worry about having a procedure carried out. I’m telling myself (today is surgery day for me) that childbirth must be much worse than surgery as you feel all the pain! Go for it and get your life back xxx

Bookobssessed profile image
Bookobssessed in reply to Brid04

Hope your surgery goes well today. Thank you for your advice I think I always knew I would have the surgery it was all just a bit overwhelming and I've spoken to family but its nice to speak to people who understand.

Sunrach profile image
Sunrach

Hi book obsessed. Totally understand because I'm in the same position although because they didn't find endometriosis on mri they are discounting it. So I went ahead and got the coil to see if that will help over next 6 months. I'm also going down the ibs route so cutting out diary, alcohol, caffeine and gluten over a long time using elimination diet to see whether its a pain from muscular spasms in my tummy. That's what the gastro consultant advised. I'm also going to stop drinking sparking water. Why not try the same before paying out privately. I know I disagree with my urogynae consultant but at the end of the day they are medical professionals. ( yes I know I'm eye rolling as well ) . Good luck with the decision x x x

Bookobssessed profile image
Bookobssessed in reply to Sunrach

I hope you find the coil works, when I went to the consultant she said oh you have the coil already well that what we usually use for endometriosis. it the same as I've read that they sometimes prescribe amitriptyline, which I'm on for my fibro, for Ibs. I am trying to be more conscious about my diet but I'm a very fussy eater. Thank you for your advice I feel so much better talking to people who understand I just felt at such a loss. it doesn't help when your doctors say oh it looks like you going to be a challenging case as they don't know what's wrong.

Sunrach profile image
Sunrach in reply to Bookobssessed

Hi loveI was on Amitriptyline but changed over to imipramine to get rid of the hangover side effect. Hopefully this will start working again on pain relief after a few weeks . Big hugs x x x

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