Scared I had this longer ...!!! - Endometriosis UK

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Scared I had this longer ...!!!

Loulou_92 profile image
6 Replies

I have heard lately that a lot of people that have had this horrible disease for years have had the same problem as me with their periods, but I have always had really heavy painful and long periods since I had my first one when I was 11. Wondering if this could mean that I have had this longer but only lately kicked off and been noticed. Help ???

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Loulou_92 profile image
Loulou_92
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6 Replies
crystal_willow profile image
crystal_willow

It is possible that you have had endo since you were very young, I feel that you are conserned about the severity of the endometriosis. Have you had your laparoscopy yet? are you due for one? The severity of endometriosis and the severety of pain do not always go hand in hand so try not to convince yourself that it is definately severe. Keep an open mind but be prepared that the severity of the endo could be mild to very severe and only a laparoscopy can diagnose and tell you how severely you are affected one way or another.

Once you have the report from the gynaecological surgeon you will know the true extent of the condition... also if you have not had a laparoscopy you may not have endo and just have very painful periods.

I hope this is helpful xx

Loulou_92 profile image
Loulou_92

I have been told that it is mild, and they dont want to think about doing another one til at least 6 months after my first one. To say that Im not worried about how bad it actually is not true but after my op and first period since october the pain, tiredness, neasua and all of that is starting to come back. But to me it just seems a bit full on if it only started in april and is a "mild" case of it.

crystal_willow profile image
crystal_willow in reply toLoulou_92

If it was made worse after surgery for you then I would not rush to have more surgery done... If they said it was mild then it probably still is by appearance and as Chrissie66 says below, it could be that your endo is irritating a nerve or two so this is less about how severe the endo is and more about how severe your pain is.

Are you recieving any other treatments? is your pain, nausia etc constant or is it around your period?

Chrissie66 profile image
Chrissie66

Hi Lou

Endo is graded in stages so if they've had a look inside you and told you that it's mild, you probably haven't got much of it in there.

But - some women who are absolutely full of endo have no symptoms, and other women who only have mild endo could really be suffering. If the tiniest bit of endo is near a nerve ending, you're going to know about it.

The reason they don't want to go in again is because endo loves scar tissue, and every time you have more surgery, it's effectively feeding the endo.

Your suspicions are probably correct, you probably have had it for much longer than the few months since you've been diagnosed. But unless it's actively growing and causing problems with your internal organs, the length of time you've had it is not always directly connected with how 'bad' it is.

Hope this helps lovey, but if not, just shout! :) xxx

Loulou_92 profile image
Loulou_92

They have put me on the pill for 3-4 months at a time and the pain and nausia and the rest is starting to become more constant.

Chrissie it has helped I was just wondering if it was possible to of had it longer than the nearly 10 months its been bothering me, as the doctors keep acting as if it just magically appeared one day Im sure thats not how it works with anything really.

Also the surgery hasnt made it worse as such just about 6 weeks after my op the pain started to come back and since new year its been getting worse, but talking to other people they say it happens and it depends on the person on how long it can take.

xxx

crystal_willow profile image
crystal_willow

You certainly would have had endo before you got diagnosed and if you were having pain etc a long time before it is quite possible that you have had endo for a long time also. x

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