Should I request to have laparoscopy? - Endometriosis UK

Endometriosis UK
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Should I request to have laparoscopy?

Hi! I’m 19 now but I have suffered with chronic period pain ever since I started my period when I was 12. Missed a lot of time in school, was often getting sick and blacking out because the pain was so bad. GP prescribed mefenamic acid and tranexamic acid but did nothing. I started having period like pain nearly every day of the month so went on the pill. Have been on 3 different pills since but none of them worked for me.

I eventually was referred to a gynae who sent me for an ultrasound but it came back clear. She said maybe I have mild endometriosis because nothing showed up on the scan. She prescribed decapeptyl injection which put me into a menopause like state and said there was no point in doing a laparoscopy because she would just give this as treatment after anyway if I did have endometriosis.

After this she suggested Mirena coil but said she would put it in under general anaesthetic as I am not sexually active and it would be very painful otherwise. She did a d&c and a hysteroscopy before she inserted the coil and said everything was okay. I have been in a lot of pain almost daily ever since I got the coil and have pretty much been bleeding constantly for almost a month (though very light). I am not supposed to have another appointment for another two months but now I can’t help wishing she would have done the laparoscopy so I would know for sure if I had endo or not. Should I request to have one? Any advice would be very helpful thanks!

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Hey, I was in a similar position to you! I found it hard to get anyone to refer me to a lap bc of my age (I was your age when I started pushing for one) as they kept saying I was too young, and that they would ideally do it right before I wanted kids. I mean, if you're in pain, you're not gonna want to wait until you've had kids, if at all, so I think them saying that is kinda pointless!

I got my lap by asking for a second opinion, and researched good gynaeos, found one at a local hospital and asked to go there. The hospital was running a trial thing so I got a lap in 4 weeks if I agreed to be part of the trial. If it wasn't for that, I dont think I'd have got one because people seem to be fine with you living in pain until you want kids as they think thats a cure!

If you've tried a lot and nothing has helped, I think that puts you in good standing as there's nothing else they can really do for you apart from maybe an MRI, but they seem so keen to treat rather than find the cause! It's annoying to have to keep pushing but it's your body, you know if something is up and I think asking for one is totally reasonable in your situation! x

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Thanks so much for replying! I think you’re right getting a second opinion is my best bet right now as my doctor seems to just be finding different ways to treat the symptoms rather than actually finding out what’s wrong. Hopefully it works out xx

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Hey, I’m the same age as you and just had a lap a few weeks ago. It took me a year to get a diagnosis but I had to see 7 different gynaes and pay £214 for a private consultation who referred me for a lap with his colleague on the nhs.

You just have to keep pushing and see different gynae preferably ones who are endo specialists as they tend to listen more and have more knowledge of the condition.

Because we are young, they do tend to try and leave out surgery since it can cause issues in the future like scar tissue build up. I have heard the coil can take a while to settle down but I can’t say from personal experience as I’ve never had it. Xx

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Thanks so much! That’s awful that it took so much for you to get a diagnosis. Was hoping that the coil would stop the pain but I feel like it’s making it worse at the moment! A few people have said that though so maybe I should try it for a bit longer. Think I will have to look for a specialist xx

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I was in the same position and had my first lap at 21 and just had my third. My ultrasound came back clear three weeks before my most recent surgery and they found patches of endometriosis all over my bladder and also found an ovarian cyst. It's really hard pushing for elective surgery and sometimes they don't find it during the laparoscopy but for peace of mind it helped me a lot to know for sure.

A second opinion always helps and if you feel it's right for you, push for it. You know your body best!

Good luck!

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Thank you so much! It’s so hard having a clear ultrasound and then they tell you you’re fine, even though I realise now that it won’t always show up. I definitely would like piece of mind and to just know for sure, I think I will look for a second opinion thank you x

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