Possible Endo - advice please

Hi,

I am 34 years old and could use some advice.

I have seen a endo-specialist in December and she suggested a to have a lap done for possible endo. 2 months later, I am still not sure if I should do it.

About 3 years ago my problems started. I always had pain during my periods, but not outside. I thought my pain during my periods were heavier, so i received stronger pain-medication from my general doctor. At that point I found out that my pain started already 2 weeks before my period and lasted until the end of my periods (so 3 weeks each month).After my period, the pain would go away.

A gyn. advise to use the pill, but that did not help with the pain. Also a combination of the pill and painkillers did not help.

About a year later I also stared to have bladder issues. A constant pressure on my bladder, like i had to go every 15 min. Later also pain in my bladder, when filling up, feeling like you have to go all the time, but hardly anything comes out.

Going back to a gyn. in another hospital, she suggested it could be endo.

I was advised to use GnRH-injections as a test. After about 6 weeks the pain was gone and a few days later also my bladder issues. Since i wasn't allowed to use it long, i had to switch to Provera. Only after about 1-1,5 weeks my bladder issues came back. Unfortunately I now also have to add incontinence to my list of symptoms.

The gyn. forwarded me to yet another hospital, to see a endo-specialist. And as told before, she mentioned the possibility of a lap.

I am struggling to make a decision. I would like to know what is wrong with me, and the incontinence definitely doesn't make me a happy person.

On the other hand, I am scared if i would do the lap and nothing is found at all.

Does this sound like endo?

It is the only possible diagnose i have received in 3 years.

Thanks in advance.

13 Replies

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  • Hi

    Yes, it sounds like endo, but of course it could be something else.

    My pain started like yours, only with my periods for years and with painkillers I was fine. And last year it started 2 weeks before period (ovulation) and was always much better after my period for a week or so. I had to do a lap and endo was found.

    Unfortunately, a lap is the only way to diagnose it 100% so if you want answers and proper treatment you should go for it instead of constantly suffering. x

  • Hi I have same and needing to run to the toilet more often has got worse as the pain gets worse. I am currently waiting for a lap as personally I just need answers to all these symptoms and I've only been given painkillers which don't do much but am now having Accupuncture while I wait. Although this is helping I still desperately want answers. As I had a laparotomy torremove a cyst 12 years ago which took 3 months to recover from a laparoscopy is much more straight forward and the recovery should be quick in comparison. Hoping a week or two

    While I'm waiting on a 4 month waiting list my symptoms have got worse and although began as yours just around period its now constant so once I know what I'm dealing with I hope I can then decide what to do rather than just guessing.

    It's your decision and you have to be happy with what you decide but this is the only way to get a definate answer.

  • Hi,

    Thank you both for your advice.

    I was also told that the only way to find it out for sure is by performing a lap.

    I do want to have answers, instead of coming up with many theories. I am definitely not happy with the bladder issues. And since the injections and provera helped a lot with the pain, it makes me think it could be endo. (unless someone else knows what helps with these meds as well).

    Only, usually the days that my bladder seems to calm down, I really start to get confused and doubt everything above. Guess I am just scared in case nothing is found and everything would be for nothing. As said before, everything is just based on guesses.

    Right now this confusing part is just frustrating me a lot. I hope I can make a definite decision soon.

  • Hi,

    I went to see my general doctor today and it got me even more confused and frustrated.

    I explained him the situation as was told in the hospital.

    He said I could get some training exercises to prevent urine loss.

    He did not seems to see any advantage in having the operation done. He said it would not change the situation or the treatment.

    Is this true? Can there be an advantage of having the operation?

  • Hi can you ask to be referred back to gyni ? Until you have a lap they don't know what they're treating and if there's only a small amount they may be able to remove it and hopefully reduce the pain. It may not change your situation but if they can give you a diagnosis the advantage is putting your mind at rest as to what's going on and then decide how to deal with it with that information. My doctor has given me painkillers and told me she can't do anything till I have a lap, then depending on what is found we will discuss what happens next. I know there are a few people on here that have been told they probably have endo but the only way to know for sure is to get that referral and as you've already been offered a lap hopefully the gyni will see that in your notes and therefore say the same. You can always ask to see a different doctor I did that after I got shrugged off! I hope you get some help and lots of helpful advice from ladies on here . Training excersizes are worth a try if it can help i would try anything while I'm waiting! The process takes a long time so could be worth at least trying to get help with symptoms. I hope it helps xx

  • Hi Lillyflower,

    Thank you for your advice.

    My appointment with my gyni is exactly 2 weeks from now.

    This is actually the 3rd hospital i am going to. The first hospital didn't take this seriously. The second they suspected endometriosis and now I am at the 3rd with an endo-specialist.

    Hopefully I am now at the right place.

    The last time I was a bit shocked about a possible operation, didn't really expect to hear something like that on a first appointment.

    I will make sure I have all my symptoms listed and discuss my options then. At least I know a bit more what to expect.

    Based on the appointment I will probably finally decide how to proceed.

    Should I go for the operation, any questions I really would need to ask about it?

  • Hi good luck for your appointment, I must admit other than asking how long the wait was and what they would be looking for I didn't ask much as my gyni just said he thought it was endo so that was what was needed. I have done searches on this site for answers to what you should ask about lap so I'm more prepered for my pre op appointment. I hope they are helpfull and as your seeing a specialist I hope they would tell you any info you need to know. Anyway hope they help x

  • Hi Lillyflower,

    Thank you.

    Since yesterday I have been getting nervous for my appointment.

    Hopefully the appointment will go ok on Monday and maybe even a decision.

    The past few days I had hardly any problems, it comes and goes. Unfortunately these better days always make me start doubting myself.

    Anyway it is nice to have this place, to share your thoughts with people alike.

  • Hi good luck tomorrow, don't doubt yourself I was told Friday I should have lap next week and id had a few days of less pain and the doubt sets in, however this morning its back! I think its easy for doubt to creap in after better days but just be honest about how you feel and your symptoms and I'm sure they will help you so deep breaths, keep calm and hope you get some answers soon x little tip when I talk to doctors I imagine talking to a close friend so I am as open and honest as I can be rather than getting toungue tied and panicking! X

  • Hi Lillyflower,

    Thank you for your advice.

    Good luck with your lap. I hope you will receive the answers you need.

    I had my appointment this morning with the gyn.

    And finally decided to have a lap as well. Was still doubting yesterday, but today doubts were actaully gone and I decided that I just need some answers.

    All to do now, is waiting for my lap date. They told me I would only hear it about 10 days before due-date. And by then get really nervous.

  • Hi I'm glad you have decided to have the lap, I've now had mine and finally have answers. Ok so not the best news but at least I know know what I'm dealing with and can now decide how to move on from here. I am feeling good only 4 daysrestimg and feel more normal. The scars are tiny and healing nicely and I can honestly say I'm so glad I did it. I feel like now I know what's wrong I can move on with treatment and therefore reducing the pains. Fingers crossed for you that you get that lap soon and I only knew a week before and was so busy getting organised I didn't have time to really worry about it so I'm glad I was told short notice! Good luck and let us know how you get on x

  • Hi Lillyflower,

    Glad to hear you that you are feeling better already. Hopefully you will receive a good treatment.

    Till so far, i still don't regret making the decision of going for the lap. I thought that if i wouldn't do it now, i would always keep wondering if my symptoms are endo or something else. Even though the pain is reduced with the medication, i still want to know just to calm my head.

    Of course now I made a decision, the past days are going better. Hardly any pain.

    Except that my mother just kept asking me why i had to keep going to the toilet -when i was at their house. I actually considered that to be a good day.

    I only still need to tell my general doctor i decided to go for the lap. He did not really see the need for it. guess that will be a nice conversation.....

    I already heard that my check-up appointment for the anaesthetic will be on 19 April.

    If everything is ok, they will plan me in.

    I requested it to be end of april or june. As I am single and living alone, i want to stay at my parents home after the lap, but they have holiday in may.

  • That's good your having better days it is stange how suddenly I get a few days and think wow this is good, then its back but those days of relief seem so nice! I'm glad you've got a date and hope they get you in so your parents can look after you. I needed my hubby the first 2 days then managed to get up and move around much easier and even went for a short walk to my sister in laws today which was nice.

    I wouldn't worry about telling your doctor they will get the paperwork from hospital after your lap so they'll do that for you! I haven't spoke to my doctor since she referred me to gyni other than asking for stronger painkillers by phone. She is not helpful and when I asked her about what I should do while I wait for referal she shrugged her shoulders at me! Not helpful !! So fingers crossed for some more good days and finally some answers soon, good luck x

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