The hospital forgot to tell me i had Endometriosis 2 years ago!!!!

Well it took 2 months to see a consultant but today i was told after looking through my notes and discussing my issues that i have Endo.....its just that the hospital FORGOT to tell me that they found it 2 YEARS AGO!!!!!!

I have been offered a lap to look at the endo and laser it way and check my previous c section scars and check the have no adhesions.

Should this procedure not take away the severe pain i have been suffering with for the last five years than i am able to have a hysterectomy even though i am only 34 :(

I am currently taking Tramodol and even that is unable to offer any comfort from the pain so the consultant has agreed that i can self medicate using Tramdol and co-codomal depending on my level of pain thoughout the monthly cycle.

I am so happy with this outcome although a little sad that after 20 years of menstrual issues and 5 years of severe pain it has taken so long to reach a diagnosis. However i am very very fortunate to have a wonderful Husband, 4 beautiful children that were naturally conceived and a strong family support network that love and support me dearly as i know there are many others out there that struggle through their own issues with out this.

I wish you all much love and good health through your own personal journeys xxxxxxxxx

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  • Hi!

    That's odd - did you have "Suspected Endo" 2 years ago or do you mean you had a Lap them and no one told you they found endo?

    It is also better to have Excision rather than Laser Removal if possible.

    xx

  • She had C-sections - that's probably when the endo was spotted - but delivering a baby is not the time to be tackling endo. Which probably accounts for the pregnancy and delivery taking a higher priority than endo at that moment in the discussions with the gynaecology obstetricians.

    Upoupo - Having a hysterectomy will not cure or kill the existing endo - you will still have endo and it will still remain active if the ovaries and uterus are removed and replaced with HRT.

    Even if just one ovary is saved - which would avoid the need for HRT, it initself is enough to keep feeding hormones to the endo.

    The best hope you have is for ALL existing endo to be removed. The initial op wil be a diagnostic - to identify all the locations that endo can be found and to remove as much as possible of that existing endo.

    Some of it may be accidentally transferred from having had a C-section it's quite easy for cells from inside the womb to get dragged out with the baby and latch on to the walls of skin the baby is lifted out through. These transplanted endo cells nest within the scar but do not tend to relocate too far elsewhere. Whereas naturally forming endo, can be just about anywhere nd may have been there from long before any pregnancy. You could have been born with those other endo patches. which lie dormant till puberty hits and the periods start then they activate.

    So taking it 1 step at a time - 1st the lap op to locate all the endo, mapping where it is found, treating what can be treated easily.

    Next step is if deeper endo was found than the laser or diathermy can burn back, then a follow up surgery to cut out the endo (excision surgery) is usually needed and depending on the location of the endo - you may not need just an endo specialist gynaecology surgeon but a bowel or badder surgeon too.

    Once all existing endo has been removed that is safe to remove - you would then be advised to stop your periods and there are several ways to do that.

    The mirena coil is the best value, longest lasting at 5 years, and lowest dose of hormones too, only 20% of the dose used in normal birth control pills.

    Arm implants Nexplanon lasts 3 years, Depo-Provera injections last 3 months at a time

    Taking BC pill pack back to back 3-4 months in a row then breaking to have a period and then back on the pills again - and you reduced the number of periods per year considerably.

    Ideally stopping periods all together is the most beneficial option.

    Another option for stopping periods is MEA or microwave endometrial ablation

    basically cooking or freezing the lining of the womb to stop it growing a new menstrual lining each month. Is a much less invasive option than a hysterectomy.

    The procedure only takes 20 minutes and you don't need a general anaesthetic .

    It is a permanent option - only for ladies with normal shaped uterus who are finished with baby making.

    Endo doesn't grow on the uterus - it's an everywhere else but there, disease.

    So a hysterectomy is not going to cure endo - al it will do is stop your periods and reduce the number of options for treating endo - because without the uterus you cannot use the coils to curtail the endo activity . Besides which having a hysterectomy can open up all sorts of painful complications beside still having endo to deal with.

    A hysterectomy is only helpful to those who have Adenomyosis - which is a separate and similar disease to endo - but only grows inside the uterus muscle walls. It will not resolve the existing endo found elsewhere in the body unless that is also attacked in the same op and removed from the body or destroyed.

    Too soon to be making decisions on surgery - wait to see what the results of the op are and what level of endo is found.

    You could use the general anaesthetic to get the surgeon to install a mirena coil to see if that can drastically improve things for you as it has done for so many of us. Bit painful to be installed without anaesthetic, so grab the opportunity of getting it installed pain free if you can.

    It is a gradual working gadget. takes 4-6months to thin the lining of the womb to the stage where it stops periods but then stops them up to 5 years. At the same time the ovaries remain working to protect your heart and strengthen the bones.

    Having an early hysterectomy is only done by surgeons in exceptional cases - they usually try and wait till you are at least 50yrs old before removing the uterus and ovaries because of the long term harm that does to the density and strength of the spine bones, pelvic bones and skull.

    Best of Luck with the op. Hope it is nothing more than a spot of transplanted endo from the C-sections and nothing too complicated.

  • Hi there and thank you so much for replies and advice......

    I have suffered with my periods since they started, 20 years ago. Sickness when i was younger, being very tired, awful back pain, very heavy periods and since 5 years ago severe pain. 2 years ago January i had to have a marina coil taken out via surgery as it had bedded itself through the wall of my womb.......it was then that they found 2 "spots" of Endo but "forgot" to tell me after!! 6 months later i had another operation, MEA due to very very heavy periods and this has really helped to stem my flow but for 5 years have really suffered with pain and am currently taking 100mg tramodol and 30/500mg co-cododmol. It was only after seeing the consultant yesterday regarding the internal pain that he discovered my previous consultant had discovered Endo 2 1/2 years ago.

    I was offered a hysterectomy there and then but after further discussion regarding leaving or not leaving ovaries in and the need to take HRT for the next 16 years it was decided i would have the lap done. if they find endo or evidence of adhesions of previous c section scars then both will be sorted out there and then. Should this operation not sort out my pain then the consultant said i would be able to come back and sort out a hysterectomy.

    I have finished my family and am also sterilised and unfortunately unable to have any more coils fitted due to many unsuccessful attempts of using them.

    FOA of impatient......please could you clarify as i am unsure....if i have a hysterectomy and have my ovaries removed am i still at risk of endo flaring up again? Or will that clear the problem up completely?

    Many thanks for your help and support xxxx

  • If you either keep a working ovary OR have both removed and go on HRT and still have patches of endo then yes they can still remain active.

    HRT is a daily chore...for decades - but if you opt to keep one working ovary in the body it should cope enough to prevent the need for HRT.

    I've only got 1 ovary. It's still holding the menopause at bay 3 years after surgery.

    The trouble with HRT is that it doesn't suit everyone and you my find taking HRT gives you side effects you are not happy with, but have to put up with.

    Whereas keeping a working ovary is something the body is already used to, so there won't be any side effects -other than the negative impact on any existing endo that is not removed but that can be removed at a future surgery if it starts causing problems and pain.

    Not all endo causes pain. It depends where it is located and what tissue and nerves the bleeding from it lands on.

    Another aspect of keeping one ovary is if you are prone to ovarian cysts - that will continue to be an issue, whereas having both ovaries out would stop that side of things.

    So there are pros and cons to both options. Eitherway getting existing endo removed at that same time is your bets hope for a pain free future once you are recovered from surgery.

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