Going through the process of being diagno... - Endometriosis UK

Endometriosis UK
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Going through the process of being diagnosed - not sure whether to have laparoscopy or not? ;(


I'v been suffering from endometriosis symptoms since i was 14 (got my period when i was 12). I'm now 21 and finally have found a doctor whos listening to me and not fobbing me off telling me it's IBS! :/ She suspects endometriosis and/or polycystic ovaries due to a ruptured cyst a few months ago. I have tests in two weeks and she mentioned a possible laparoscopy. The only thing is, she kept saying it's only really worth going for and they only really help you if you're wanting children now. I do want children but the initial plan was to wait a couple of years. Should i have the operation anyway so that i can be officially diagnosed and know whether to bring baby plans forward or not? I have been on the pill since i was 16 but lately am feeling the pain whether im on the pill or not. Or should i just wait until i actually want to plan for a child before i have the operation? confused ;(

5 Replies

Hi - If I were you, I would say that you need to have a diagnosis in order to get the right treatment. Actually, you are at the same stage as me. I had painful periods from the age of 13 and have been on the pill for 30 years. My consultant was shocked when he heard that and said why didnt they ask themselves what is the underlying reason why a patient has been on the pill for 30 years. You've got a doctor who listens which is gold dust.

I have my lap D&C tomorrow and hope to finally, put a name to what this animal inside me is.

Good luck - have a think and please post again and let me know how you are getting on. :0)

in reply to Merlion09

Thanks very much, your post has just made something in me click. You are right, it is better to have a diagnosis - particularly as endometriosis has similar symptoms to things such as cervical cancer.

Yes, it is a shame that we are stuck on synthetic hormones for so long to prevent the symptoms rather than diagnose and treat the cause. Good luck for tomorrow, i hope everything goes well for you and you get the answers you need. Please let me know how it goes for you (:

I will keep you posted also! x

If you choose a lap make sure it's an excision lap with a surgeon who understands endo. There is little point in them opening you up to confirm diagnosis and then leaving it.

Try and remember that sadly hormones do treat endo as there isn't much else that does treat it. A good management option is the coil or tri-cycling the pill after a lap.

With the fertility thing please do your homework because 60-70% of women with endo will have children. Some will decided they don't want them, and others don't have a choice.

It's horrible not knowing, like many women I had to wait 15 years for someone to listen. I can understand your doctors view, as laps cause more adhesions and treatment laps are very beneficial for fertility.

If I had my time again would I have wanted to have a lap earlier? Probably not, I would probably just have had it before I started ttc and would have sought fertility help sooner.

Good luck with whatever you decide! Hope that makes sense too as I'm dosed up today on tramadol and things are very wobbly :) x

in reply to Cloudyrain

I don't get on with the coil unfortunately. I do tri-cycle my pill, which was very effective for quite a few years but recently i have been getting cysts and pain even whilst im on it. My friend said some hormone treatments aren't available until you've been diagnosed officially - is that true?

It's good to know fertility rates are that high - i am just worried as my mum and aunty had trouble conceiving due to endo and polycystic ovaries. I am so very like them which is why i am concerned :/ I am sure there is a lot of help available though so i will try not to worry about it too much and take things as they come!

It makes sense, thank you for your reply! it's good to get different perspectives as i dont want to rush into a decision. I hope you are feeling okay! :) x

That's ok - I'm not sure I understand myself sometimes, I blame the endo-fog :)

I bet your friend is on about stuff like zolodex and prostap which basically put you into a menopause state. I found it marvellous, but some people have a terrible time on it. I had previously loved being on the depo provera shot though (lots of bleeding but low pain levels) and if I wasn't ttc would use depo again. Some women do have a treatment lap and then go straight back onto tri-cycling so if that's worked for you before it's worth trying that route if/when you decide to have the lap.

I would recommend the endo for dummies book, it's really useful and explains the pros and cons of diagnosis and all the treatment options. Also the Live Well with Endo book is good for more personal views of options and alternative methods.

Whatever you decide good luck x x x

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