Last week I had my first lap surgery. When I was woken up from the anesthetic my surgeon said she found endo behind my womb and treated it. I expected this as the pain was around the rectal area. She also inserted the mirena coil which I had previously agreed on should she find any endo during surgery. It was a very quick brief and off she went to her next patient.
A few days after I was discharged I looked at my discharged papers properly and under the ''final diagnosis'' section I read that I had ''division of bowel/ovarian adhesion.'' This sent me into an emotional and mental panic as I hadn't been told any of this. I feel I have been robbed of the opportunity to ask questions regarding this. Its my reproductive organ after all!
So my question is, is it worthwhile going to my GP to discuss what was found during my surgery? I don't even know what stage endo I have. There are no scheduled follow ups except to check my coil in 6 weeks for infections. If I was to try find out more information where should I go?
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I would get in touch with your specialists secretary, to arrange an appointment with your specialist, tell them you'd like to go through their findings, etc, you should really have a 2 week check up to see how you're healing. It's something the NHS needs to work on unfortunately.
Your GP may be able to help but they'll just be going off the letter you've been given which is usually forwarded onto your GP and sometimes they don't know enough to be able to look into it.
My specialist doesn't like the idea of stages because he feels it categorises something which although the stage is based on what they find they symptoms can vary so much.
You need to know a few things, so it's worth asking your specialist the following:
Where they looked during your lap? Did they check your bladder, uterus, bowel and abdomen walls? General gynae quite often just check the uterus. Endo specialists will be more thorough.
How they removed your endo? excision, ablation, laser, these all make a difference to recovery and regrowth. Excision being the best as it cuts out endo so removing the most, the other methods do work but they often leave deeper endo to regrow
If the coil doesn't agree with you how will you know? With the coil they often say that it'll take about 6 to 9 months to get used to it, so during that time you may not know the difference between side effects and endo symptoms. That's why my specialist doesn't suggest hormone treatment until about 5 months after lap once we know what our new "normal" is.
Why do they not do check ups / follow ups? A surgeon should want to know how their patient is recovering and discuss next steps, perhaps it's another downside of the NHS.
Have a read of the NICE guidelines for treatment of endo, it's what doctors should follow so it may help you with what they should be doing.
Thanks so much for your response Farahziya! You've made some valid points actually so will definitely be discussing this with my GP and hopefully she can refer me to a specialist instead.
I wasnt really expecting the coil, they sort of sprung it up on me the day of the surgery so I didnt have time to think it through properly but as you say you need to understand your new normal first so I think I'll get it removed. Its certainly has made any cramps etc rather confusing.
Regarding check ups, I think the NHS just dont have the resources for it. I think this is where the difference is between specialists and NHS hospitals.
Thanks for the tip of the NICE guidelines. I'll certainly have a read before my appointment with my GP!! Hopefully I can get some answers.
Hope you are recovering well on your endo journey. Sounds like you have a great specialist looking after you so fingers cross for you x
Yes definitely go to your GP, that’s what I did 🤩the hospital will have sent notes to your GP and I would imagine you will get to see them quicker than waiting for a hospital appointment. Try not to worry too much, medical jargon is confusing for us who aren’t trained. Hope you are feeling better after your surgery x
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