Endo: Hey I am new to this so please... - Endometriosis UK

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Endo

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Hey I am new to this so please forgive me.i have been in twice for surgery second was to remove my ovarie as my endo kept coming back.i am still in a lot of pain and have no energy at all,struggle to go to my work.i am currently on prostrap and back up hrt.

Do you still suffer from endometriosis if there isn't actually anymore there.any advice would be great as I have never been told much about it.thanx

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Impatient profile image
Impatient

It's a bit more complicated, you can have allexisting endo removed with surgery. That does mean that there is no remaining endo to bleed each monthly cycle.

But there will still be damage caused by the old endo, scarring and adhesions from that and from the surgery to remove it. Damaged nerves can also be a cause of pain too.

So while strictly speaking if all existing endo is removed and is not present to cause a problem, that is only part of the story because of the damage it may well have already done inside you.

Also if your body doesn't have the abilty to stop new endo cells nesting in new locations then that willalways remain a threat for the future. In that sense once you have endo - you are at risk of new lesions forming in the future.

One way it is known to spread from the womb is through back flowbleeding of periods along the fallopian tubes, which is why stopping periods after a surgery is certainly one thing you can do to reduce your chances of new lesions, but as backflow is not the only way endo moves to new locations, it would never be a 100% effective was to prevent new endo.

Endo is thought to be also able to move through the blood stream too. Not much you can ever do about that. No one knows all the possible ways endo can spread so you can only do your best to stop what you can.

Whether that is getting tubes tied, or a hysterectomy or hormone remedies to reduce or stop periods, al of these may help reduce your future chances of new endo, but none will resolve the problems left by the old endo. Surgery to cut back adhesions, and barriers or buffers put in to try and prevent the regrowth of adhesions too soon will help too. Sometimes nerve blocking injections can be used for specific neuralgia pains caused by endo or surgery. Sometimes specific meds like Anti-depressnts act to block the pain signals traveling through nerves too.

While yo are on Prostap and HRT, your womb is inactive, your ovaries are inactive and so too will be any remaining endo lesions left behind from surgery. It will also render adenomyoisis inactive too.

Once the Prostap is finished and out of your body when ever you stop or decide to quit, then as soon as the pituitary gland wakes up and starts producing sex hormones again, all the oestrogen reliant tissue will wake up once again. So endo or adeno will reactivate, ovaries wakeup and start ovulating and the menstrual cycle kicks off again - and with each period is the potential threat of new endo cells traveling to new locations to make their new home as endo lesions.

If you do suffer pains while on Prostap it will not be the endo, and is probably the result of the damage caused by endo in the past or the surgery to remove it which will be felt in the same locations as that original endo used to be.

Noamount of surgery on endo seems to resolve the feelings of exhaustion and fatigue- they remain with you as a legacy of endo. There is no known cure for that. It is an issue raised almost every day on this forum, and chronic fatigue is something you have to work with or work around.

You will not be able to do half as much as you used to manage to do, so adjusting your workload and homelife to take that in to account is the only way to give your body the rest it desperately craves as your immune system is shot to bits and your body uses up so much energy fighting off bugs and virus that you encounter every day. People with an efficient immune system don't notice that their bodies are constantly battling invaders, but when you have endo and chronic fatigue, it is an exhausting process.

emmah12581 profile image
emmah12581 in reply to Impatient

Thanx so much for getting bk to me.i was never totally sure of what prostrap was really for.and if my fatigue would ever go away as it is so hard doing my work at mo.i have also took infection since opp which hasn't helped.

I thought that after surgery and having hot all endo removed I would be feeling great.but total opposite.and it's hard for my family to understand

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