Is my pain normal?

I am having my first lap in 3 weeks time. I suffer with very bad pain during sex and for a few days afterwards and suffer quite bad during my periods. I have recently been suffering with bad pain when I need a wee? I have seen online that it can effect the bladder. Does this mean that if this pain is endo it has spread to my bladder? If so do they remove it or can't they remove it??xx

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  • Hello. I have these symptoms too and for me the cause of bladder issues is large ovarian cysts (pushing on my bladder). The laposcopy will hopefully fine the cause, and my understanding is that endometriosis can be removed from the bladder. Good luck! X

  • Hello! :)

    It can actually spread all around the body (in VERY rare cases) i had it wrapped around my bladder and the removed as much as they could.

    I had pain during sex, after sex, going to ths toilet, bending...i could go on.

    the organs in your pelvis are free they are not attached to anything so when you have sex it all moves out the way to accommodate (if you get my drift) so imagine tissue has fused these organs together or to your pelvis of course it's going to bloody hurt as nothing can move!

    Try different positions that may not be as invasive...

    Hope this has helped! X

  • Hi Kirsty,

    Before you start to panic too much, please consider this... Whatever is going on, you are due to have a lap anyway, so there is a good likelihood that this may discover answers for you.

    In the meantime, in answer to your questions, I can offer the following, and other people who use this forum may also be able to step in and offer additional assistance. It's good that you found a forum used by women, many of whom like me, have experience of Endo and its symptoms. That way, you can talk to people who have lived with the disease, and sort of "compare notes". Anyway, to answer your questions...

    The symptoms you already have are suggestive of possible Endo. Endo can have many and varied symptoms depending upon where the lesions grow. Pain during sex, and painful periods are NEVER normal, so clearly the fact that you have them suggest some sort of problem, or inflammation in the pelvic region, one cause of which could be Endo. This can additionally cause problems with pain, and frequent feelings of needing to urinate, especially if growing on, or near the bladder area, or on or near the ureters (tubes that connect to the bladder from the kidneys). IF, and remember, I only said IF... IF you do have Endo in one of these areas, it may well be picked up during your lap. Sometimes, if Endo is only superficial, it can be lasered away during the lap. However, more extensive Endo, or indeed, deep infiltrating Endo (which is the sort that I had) may require further surgery at a later date. This is because it may necessitate more complex surgery, and if the Endo has affected the function of organs such as bladder or bowel, a multidisciplinary team including badder/bowel specialists may need to be on hand. Deep infiltrating Endo is, as the name implies, Endo that grows deep inside tissues of the body (e.g. in my case it grew as a nodule inside my utero-sacral ligament). Because it is deep inside tissues of the body, it cannot be simply lasered off. Instead, the surgery required to remove it is excision - where it is cut away.

    I would advise that you wait to hear what is found during your lap. If this is your first, then it will be a diagnostic lap (i.e. to see if Endo is present). Sometimes, a diagnostic lap can also include treatment if there is superficial Endo that can be lasered off there and then. If your Endo is more extensive, or of the deep infiltrating type, it could be that they just do a diagnostic lap, and discuss the findings with you afterwards. This provides an opportunity to discuss future treatment options, and to plan the best one for you. It could involve a more detailed, excision surgery at a later date (and if so, ask as many questions of your doctor as you feel the need to, so that you understand what will be happening).

    You should also bear in mind the fact that your symptoms may not turn out to be related to Endo at all. Other things could be going on that may cause the symptoms you experience. Pelvic and abdominal pain, especially when associated with a feeling of needing to pee a lot, could result from an undiagnosed urinary infection. I am assuming that this has been checked, and ruled out. If not, it might make sense to ask.

    The symptoms you have can also be associated with Adenomyosis, which is similar in a way to Endo. Adenomyosis is where the lining of the womb becomes abnormally thick, and also spreads or grows into, or inside, the muscular walls of the womb. It can cause heavy and painful periods. It can also cause the womb to increase in size, which puts pressure on your bladder, and can cause pain or a feeling of having to pee. Adenomyosis cannot be seen during a lap, but it is useful to consider this as a possible cause of your symptoms, should your lap show no signs of Endo. (For info, read healthline.com/health/adeno...

    One other thing that could cause the symptoms you have is Pelvic Inflammatory Disorder/Disease. This is not the same as Endo, because it is not caused by lesions growing anywhere. Instead, this illness is typified by pain and inflammation within areas of the pelvis. It could be brought on by untreated infection, or possibly caused by trauma from previous abdominal surgeries, or by giving birth. (For info, try bupa.co.uk/health-informati...

    I apologize for the lengthy reply, however, I hope that there is something here that puts you at ease. As I said at the start of my reply, don't worry too much, as you are already going along the right track. It sounds to me as though the fact that you are due to have a lap is a good thing, as it is an affective way to find out what is going on. So, really, you have ALREADY taken the correct action. Rather than stress, tell yourself that you have done the right thing, and have sought a medical opinion. You are due to have a lap, which is a good way of getting answers. Once you have a clearer idea from the lap, as to what is going on that could cause your symptoms, your next step is to discuss with your medics the best way forward in terms of treatment that is suitable for you - and which suits your needs and lifestyle. Remember, this is YOUR body and you know it best - so you are in control, and have every right to ask questions, seek information, and to ensure that any treatment you have is the best option for you.

    Good luck for the future. I hope your surgery goes well and that you get the answers you need. Wishing you a safe and speedy recovery.

    E. x

  • Hello,the above post was very well written.

    I would say that it is better to know and tackle it head on,that be in constant turmoil wondering.

    You have taken a very brave step and we will be here to discuss your journey with you as it progresses.

    You can do this and you will.

    Kind regards

    Rose

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