conflicting advise

I have been reading many posts of late and find you all so inspiring. My endo is stage two at the last op (4 years ago). My pain is not on the scale of others, but my sex life is nil due to the pain. I was wondering if anyone had conflicting advice from there gynaecologist?

I have seen different people on each appointment. One said a lap would not be good if I wanted children soon. Another was convinced that Decapeptyl injection was best, another then said something totally different and finally the surgeon saw me and said that a lap is best. I have lost all faith in them. Who or what is best?

The first op didn't fix the deep internal pain, I was told you have endo and booted out the door. No follow up no info. A year later they didn't seem concerned by this. I have been coping on my own and researching stuff for myself but I’m no expert. I have never been given any info about treatments or any clear advise on the side effects of the treatments. They have also dismissed my bowel trouble as all part of the course without investigation.

Shall I, should I seek another hospital? I am so concerned about annoying and confronting the people who could help me.

6 Replies

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  • I would call the advice line that comes with this site and talk about all of this with the trained staff as it sounds like there is alot to consider. You have every right to be assertive when it comes to getting the right healthcare for you. winona.edu/stress/assertive...

    xx

    Sorry I wish I had more time to comment so I have been brief here. It must be so frustrating to have so much conflicting advice from people.

    xx

  • Hi, I am very sorry to hear that. It is not a good thing that you go to the hospital and ended up feeling more anxious.

    I had several opts and same here. I was asked to choose if I want to get pregnant or get my life sorted. I had to choose my life because I got to keep working and doing my day to day things and with endo that was impossible.

    I found that a lap do give me a temporary relief ( as mine keep coming back every year) but also you can get refer to the fertility clinic. Endo does interfere with pregnancy plans (it makes harder to get pregnant) and by treating it will give you a good start of fertility side.

    I got this article from daily mail in 2010 about endo and they got a lap surgeon from royal wolverhampton hospital saying treating endo" will improve a women's chance of conceiving,giving her a window of time."

    Finally I do recommend you to go for another hospital to see if you get better team of doctors. They sounds rubbish at the moment and its your body and don't let them screw you. Mine seems forgot about refer me to a fertility clinic after waiting for 2 months. I now got another hormone disorder and off to blood test. So am getting myself mentally prepared to speak to them about it .

    Hope it goes well for you.

  • It is hard to keep a clear head and think logically on your own.Thank you to you both for your support. I feel that I should phone the helpline to get some advice. I really hope you get the right help. It is sad that we have to fight for the help we need. Take care and all the best x

  • My very first gynae when I was diagnosed was a really brusque little man. He was used to just seeing people, operating on them and then sending them out of the door. Nobody liked him, and people used to dread going to see him.

    One day, I went to him with a list of questions. After I'd asked the first one, he looked absolutely gobsmacked that I would dare to question anything, and tried to close the interview. But I had more questions...

    Over the years, he and I developed a really close working relationship. Soon after that first visit, when I had had the temerity to answer him back, he told me that I was like a breath of fresh air. He said it was so disheartening to constantly be dealing with women who didn't ask questions about their own bodies. And after that, each appointment with him became a two way discussion, he would explain what was going on and tell me what he thought he would do about it, I would ask questions about it, and often, between us, we would come up with a totally different game plan.

    When he retired, I was devastated. But when I met my new gynae, the first thing she said to me was that the old gynae had put a note on my file saying "Look after this lady; she's special". And my new gynae and I are now on first name terms

    The moral of this story is that although the medical profession are the experts, they are still just people. In my experience, they like it if you ask questions and show an interest in what's going on. I don't mean by rolling up at the appointments and shouting the odds because things aren't working and asking What They Are Going To Do About It!! but if you went and saw one of the people you've seen already - say the one who advocates surgery - you are perfectly within your rights to say something like "Why do you think surgery would be better for me than Decapeptyl?" and give them the opportunity to explain. And if you're not happy with what they say, or don't understand any of it, ask them. Always go armed with a list of things you want to ask so that you don't forget anything, and take notes when they answer, if you want to. You shouldn't be left alone to deal with something like this; ok, it might not kill us, but it still dictates how we live our lives on a day to basis, it's a big thing!

    Go back to your hospital with your list of questions, and if they still fob you off, look on the internet for endometriosis specialists in your area, and ask your GP to refer you. But hopefully it shouldn't come to that :)

    Good luck! xxx

  • Thanks for your response. It is wonderful that you have a good relationship with your gynae. When I have seen my surgeon and he and I do get on. But I have only seen him once in four years! I have took in a list of questions last time and did get many answers, like what stage am I? I am considering being referred to a specialist but getting time off work is a challenge. Lots to think about. Thanks for your support. x

  • I think I got lucky; my gynae isn't an endo specialist but she LISTENS, and if there is something she's not sure of, she'll go off and find out. I appreciate that not everybody is as lucky though. I really hope you make some progress, the disease is isolating enough as it is without being left to deal with it alone xxx

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