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My daughter has just been diagnosed 😢

Hello - I just joined today. My daughter was diagnosed yesterday. I had no real idea about what it was but since looking on the internet it’s made me feel worse about her condition. She’s 18 and has just started a relationship. She’s having pain every time she has sex which I’m finding so sad for her at her age! I can’t seem to find any resolve on the internet to help her with this! Her gynaecologist gave her a few tips but my daughter opened up to me and said they didn’t work 😢
I’m hoping some of you can help, give tips? Is surgery the best thing to help with pain during sex? I feel a bit overwhelmed by it all! Her gynaecologist has said she’s a bit young for surgery so doesn’t recommend - is that correct? Thanks all 💜

  1. Hello Marmalade
    I am so sorry that your daughter is dealing with endometriosis. Hopefully you both will be able to find answers and support within our community here. (While we are not medical professional and cannot give medical advice, we share from our experiences and such.)
    I would like to start with the fact that 18 is not too young to have a laparoscopic surgery for endometriosis. I was 16 when I had my first laparoscopic surgery. Despite this, there are many treatment options that can be tried prior to taking that step. Such as hormone and anti-inflammatory medications and doctors tend to want to try out.
    When it comes to sex, it can be a very personalized situation. Some women feel the pain during sex, some feel the pain after sex, or both. It is extremely important to be properly aroused. For most of us, significant foreplay is a must, sometimes added lubrication can help too. Having a partner try slow and gentle movements instead of fast and hard thrusts can be helpful. Sometimes being on top can help her control how deeply he enters.
    The most important thing is for them to have open and honest communication. There are always alternatives to penetrative sex such as oral sex, clitoral stimulation, and toys.
    I hope some of this helps. - Amanda (team member)

    1. Thank you Amanda for the reply - I will talk to her about those things as much as she will allow me too! That’s interesting what you said about the surgery, so it is an option then??? I’m happy to take the wait and see Dr approach but it’s good to hear that we do have that option. Does the endometriosis often come back though? Did your operation at 16 help you a lot at the time? Thanks again for your help.

      1. I am truly sorry to hear your daughter (and you) are having a tough time finding answers. I can't give you medical advice, but there is not an age limit on when you can have surgery for endometriosis. Many teenagers get surgery, but some doctors delay this option because they think young people can't have endo. (Also, the only true way to diagnose endo is through a laparoscopy.) It's never a bad idea to get a second opinion from a surgeon who regularly treats people who have endometriosis. With that said, I will say that pain with sex has been one of my biggest symptoms. But I've found relief! My first and third surgeries helped a lot — I had scar tissue, endometriosis, and something called "deep recession pockets" that all needed to be removed. But pelvic floor therapy helped almost as much — I had serious pelvic floor tension. Your daughter could see a pelvic floor therapist while she explores other treatments options. You can also send her to endometriosis.net to type "sex" or "intimacy" into the search function. There are lots of tips from our warriors, including myself, on what's actually helped. Please have her reach out to us, or DM me directly, if she's got some specific questions! - Keri (endometriosis.net team member)

        1. Hello Keri,
          Thank you so much for your reply - it’s really helpful to know all of those things and encouraging to hear that surgery is in fact an option and quite a common one. The pelvic floor therapist is useful too - I’ve never heard of such a therapist! Are they easy to find? Thank you also for the support that you are offering my daughter - I will certainly pass all of this onto her. Thanks Keri 🙏

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