New and a bit lost

Hi, I'm new to this community but I just wondered if anyone was in a similar place as me.

I was diagnosed with endo at 23 after donkeys years of seeing different doctors who just kept telling me there's nothing wrong and I'm too young for endo.

I eventually had a lap and a few others things done and at the time told this was the answer to my prayers, but obviously the big man was having a day off then because I just felt the same and at a loss.

Me and my partner were desperate for a baby but was told there was a 4% chance of that happening. But 4 years later we have a cheeky chappy and endless Peppa Pig!

I am now suffering terribly with pain and cramps, crippling me which isn't good with a young toddler. My partner says I should go back and have another lap done but I just don't know if I should. I didn't feel much difference the first time and the recovery wasn't too good.

Although I would do anything to rid this condition, my priorities have changed to my son. I need to be able to look after him so the thought of another lap isn't at the top of my list.

My doctors just look at me without much suggestion so I wonder if anyone has tried anything different?

What about the 'endo diet'. apparently that will ease symptoms. Has anyone tried this?

I'm sorry this is a long post but I really am desperate now.

Thank you

xx

2 Replies

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  • Any consultant who promised you that having a lap would be an ' answer to your prayers' ( at least forever ) was either not that experienced with endo or a little arrogant in respect of his / her skill. There is no absolute cure for endo. Some women do get short or long term relief from surgery, sadly others don't. It is possible however that it might be useful for you to get a second opinion. Different surgeons use different techniques and sadly, it can be a bit of a hit and miss experience in finding a good one. Basically, whoever operates should be committed to excising the endo (as oppsoed to just blasting the surface with heat) and must be a very competent laparoscopic surgeon. Unfortunately, it is quite common for women to have multiple surgeries either because they need them or because people who operated on them in the past did a poor job.

    So, that's the first suggestion - get a second opinion from an endo specialist. If you put a post up asking for a recommendation saying roughly what part of the country you are in, you might get a few pms from forum members. We are not supposed to name consultants on the actual boards unfortunately.

    Secondly, have they tried you on any type of hormonal treatments in the past? Again, people react differently but it might be worth exploring.

    Thirdly, are you taking any pain relief? If so, what have you been offered? Nobody likes to take drugs but if it will help you to cope with taking care of your toddler then...

    You mentioned the endo diet. Again, some people find variations of this type of diet useful to a greater or lesser extent. Personally, I did not find the diet in whole made much difference (years ago) but there are things that I find useful to cut out - like wheat, chocolate, citrus, too much sugar as I find that they don't help some of my bowel and bladder endo problems. I've been a veggie for decades so can't comment on whether red meat would make things worse or not.

    Bottom line - for me, the only things that have helped (though not long term) are various surgeries and pain relief. I have to take a lot of pain meds but I have a history of severe infiltrating endo with also a lot of adhesions - endo and surgical - you might feel at least some relief with fairly moderate pain killers - if you are not already taking them. Everything of course masks the endo. Successful excision surgery before the disease becomes too complex is usually the best action - but of course this may not be right for you.

  • Thank you for your reply. I was interested to see what others have experienced.

    I take over the counter pain relief which helps initially, but like you said, it just masks the pain and it's always there so I try my best to just try and cope the best I can.

    I haven't been recommended any other types of treatment or relief from my doctor, I'm convinced that they just don't know enough about endo so just cross their fingers I will go elsewhere.

    Thank you for your suggestion of a specialist. I think I will try and find one that I can actually get an answer from.

    Having another op is my last option really as I really want to find a solution for me that I can control a bit, but I realise this may be what I need to do.

    Thank you for taking the time to make your suggestions, I am really grateful for any help xx

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