Not fully diagnosed

[Athesenia]

Hi, I'm new here and I'm looking for some advice.

5 years ago I had a hysterectomy due to extreme pain and bleeding during my periods. Pain so bad I couldn't function and blood loss to the point of 2 boxes of tampons and 3 packs of pads each month and I still bled through. Tried everything from endomatrial ablation to prostap injections and finally a hysterectomy. I only have my ovaries left.

I've just recently been in hospital due to pain and unsure what was causing it.

Having spoken with many doctors over the week and having countless tests done, the last consultant I spoke with asked if I'd ever been diagnosed with endo. My one word answer.......No.

The consultant was then confused why I hadn't been checked for it initially when I first saw a doctor many many years ago....I had a laparoscopy done about 7 years ago and ovarian cysts were noted (one had ruptured) but no other diagnosis for pain.

I started my periods at a very young age (9) and always had heavy painful periods but was told each woman was different and not everyone would have the same periods. For almost 20+ years I'd had pain and extreme blood loss.

I've been told a definitive diagnosis cant be given as I no longer have periods and only have my ovaries left.

Can anything be done to confirm if I do have endo?? I'm still in pain atm (2nd week now) but not as much as last week. At least I can move now anyway.

Any advice would be great and any suggestions of what's worked for the pain?

Thanks in advance for any advice.

[NW248]

It is very common for endo to never be considered by doctors or gynaes.

I can't see any reason why an MRI or lap can't still be used to see if you have endo. If you still have ovaries, then it is still possible.

Have you ever been on Zoladex? It basically stops hormone production so should help if it is endo.

[Athesenia in reply to NW248]

Thank you x

[Mexico2011]

Hi I am sorry to hear what you are going through. I've had the exact same problems as you, I've had a laparoscopy 2 years ago and still didnt check for endometriosis. I'm at the point now were I think my best option is a hysterectomy. As some days I cant move. Would you advise the hysterectomy if you dont mind me asking ? Just I thought if I got that done I would be pain free ,however you have said you are still in pain is it worth it.? Have you tried a tens machine and hot water bottles they help me a bit thanks

[luthien in reply to Mexico2011]

A hysterectomy doesn't sort endo unfortunately, even a complete hysterectomy; we are mammals and thus all produce low levels of oestrogen, this is what endo needs to grow. Endo isn't directly from cells in the uterus, it is though to be like the cells there so even with removal of the uterus the cells will still be in our body, once we have endo it doesn't go away.

Some women have found a hysterectomy with removal of endo reduces symptoms for a while but they'll always come back as the endo regrows.

I would suggest the same as my reply to Athesenia; check for BSGE centers near you and be referred to one of those, they can check for endo and can advise on the best course of treatment.

Also check the Endometriosis UK website:

endometriosis-uk.org/gettin...

xx

[Mexico2011 in reply to luthien]

Many thanks for your reply hope you get the answers your looking for . At the minute am willing to try anything so I'm thinking hysterectomy if this helps ease the pain even a bit am going to look into it. I asked my doctor to refere me to one of them centres he said I've been to see a general gynaecology doctor and they would have seen it, but refuses for me to see a specialist in this area. I've had enough lol thanks alot x

[Athesenia in reply to Mexico2011]

Thank you x

[luthien]

You'd ideally need a lap with an endo specialist, they can visibly see where the endo is, know where to look, and can see what it's effect is on organs. It doesn't matter if you don't have periods etc as they can still check for endo.

Have a look at the BSGE website for centers near you, you can then be referred to those; they have endo specialists. xx

[Athesenia in reply to luthien]

Thank you x

[StefaniaJW]

If the only laparoscopy you had done 7 years ago was to remove ovarian cysts and if the hysterectomy was not accompanied by excision surgery, endometriosis was not treated nor removed and has always stayed there. You have probably had endo since the beginning (9 years-old) and no one clearly treated in any effective way (endometrial ablation can help with adenomyosis but only to reduce the bleeding, it doesn't treat either diseases in any way + a hysterectomy is only effective for adenomyosis while it does NOTHING to endometriosis). I suppose you have left the ovaries in to undergo IVF in the near future.

Clearly you have not visited any competent doctor in your life so far. I am very sorry but it is not your fault. Lack of knowledge among practitioners is so widespread it's crazy.

Only an experienced excision endo surgeon can help (either an extremely amazing certified surgeon working at a great BSGE centre or a Nancy Nook surgeon -the best option). Best of luck with excision and your future endeavours!

[Athesenia]

My ovaries have been left as I was only 32 when I had my hysterectomy. Too many complications if they're removed at a young age. I've had my children and have no plans for any more so no, my ovaries weren't left for IVF in the future.

It looks like I'm going to have to find a way to deal with the pain if it happens again

Thank you for your information tho. Its appreciated. X