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  • Hello all, I’m new to these forums and just signed up because I am in a relationship with a woman who has Endometriosis. Since this is my first post, it may be a bit long as I try to give some info, so please forgive me. I am a 40-year-old male, and my S.O. is 39, and we have been in a long distance relationship for about 4 years now. She has Stage 4 Endometriosis, and has had a number of surgeries over the years to remove cysts, and ended up accidentally having one of her ovaries removed about 2 years ago during one of the surgeries because the surgeon didn't even know that was her ovary and couldn't identify it because of all the endometrial mass wrapped up around it, and only found out that it was her ovary afterwards when they did a biopsy. Her doctor has her on medication to stop her periods to help with the endometriosis, which effectively puts her into medically induced menopause, which unfortunately comes along with all the side effects of menopause (i.e. mood swings, hormonal acne, hot flashes, sweats, trouble sleeping, etc.) Even with those meds, recently she got her period the last few months, and it was very heavy, and lasted a few weeks, and at times she's getting spotting. Even with the meds, she still suffers from a lot of pelvic and back pain, and her latest exam shows a lot of endometrial growth also attaching to other organs. During her physical back in April, they found 2 cysts in her ovary from her ultrasound that she did for her yearly physical, and in her pelvic area that showed up from an MRI. The specialist also told her that her pelvis is frozen, and when she did a hysterosalpingogram her fallopian tube is blocked and the dye didn't go through. Her specialist strongly recommended she has a hysterectomy, and I know this is very difficult for her. The specialist said he does not want to remove her remaining ovary because she's still young, the only way he'll do that is if when he goes in there and it's really damaged, of he finds endometrioma or cancer cells, only then he'll do that; so he'll only remove her uterus; and that will just help, but she'll also have to be on birth control pills. Right now she's just waiting for the surgical coordinator to call her back to schedule the surgery, but the specialist told her with the amount of endometrial growth inside her, the surgery is very difficult and is a very complicated compared to a surgery someone with cancer would have, and she has to be prepared for the risk involved. So with all of this that she's going through, and not being able to really be there for her in-person the way that I want to due to the LDR situation, I know she is feeling very scared, angry, frustrated, overwhelmed, and a whole host of other emotions, and I want to know how best I can be understanding and supporting for her? I have a few questions to try to better understand, and would appreciate advice from you ladies who are afflicted with endometriosis, or have been in the past, as well as Partners of those who are suffering with Endo. For the last few years, her mood can go from being okay, to getting very irritated and upset for small things. She has gotten very irritated and moody and feels very down and overwhelmed and just wants to be left alone, and that will last for days, even weeks at times. Are mood swings common with endometriosis? Does it really affect your mood so drastically like that? I'm sure also adding to it is also the fact that since she started taking the meds a few years ago, she hasn't been able to get a good nights sleep for the longest time due to the hot flashes and sweats waking her up throughout the night, and lack of sleep and exhaustion would really affect anyone. Plus, also the additional hormonal changes in her body due to the medically induced menopause has really got to be affecting her even more. What is the usual recovery time after a having hysterectomy, and what would help her through her recovery process? What can I do to help her emotionally throughout all of this? She and I do want to have biological children of our own together with each other in a few years when we are able to be together in-person, so if her ovary is not removed during the hysterectomy, would it still be possible for her and I to have our own biological children via surrogacy? If so, what's the usual cost for that? She is absolutely the love of my life, and I want to do anything and everything I can to be supporting, and understanding, and be there for her however I am able to be. Thank you all in advance for your answers, and your advice.

    How do you prepare for travel? Do you have tips or tricks that make it easier to get from point A to point B – or just help to ease the anxiety? Please share!

    Preparing for surgery can be scary… Especially if you have no idea what to expect! A lot of our community members are seeking tips to prepare for surgery and tips for after surgery. Share your experiences and what has helped you through this time.

    Hi everyone! I'm a substitute teacher who was diagnosed a few days ago. My symptoms have been steadily getting worse for years and have gotten in the way of me living my life and performing much easier jobs in the past. I love subbing, and may someday want to have my own classroom. Are there any teachers out there that can share some tips on how they manage?

    Hello! I’m new here and was looking for anyone’s advice really on my current situation. I’m 25 and after years of going to the doctor with horrible pelvic pains and trouble with intercourse my doctor finally suggested an exploratory laparoscopy. I had it done last Monday which during the procedure he said he found extensive endo and “corrected it” by burning the tissue. He explained it was on both ovaries heavily and also on my pelvic wall where there was an unexplained large amount of free fluid. I came home to recover and was somewhat happy I had an actual reason for my pain (it wasn’t all in my head like others had said before). Tuesday evening I started having terrible cramps (charley horse like) in my right leg. I assumed it was surgery related and from what all I had just went through so I tried to alleviate it at home by taking meds, applying heat, elevation, etc. The cramping continued but the next day radiated to my other leg as well. It’s best described as an intense pinching feeling in my calf’s. Called my doctor that Thursday and explained and they had me go to the ER to be tested for blood clots which came back negative. All of my labs came back perfect as well no infection, dehydration, or potassium issues. Now they are saying that they aren’t sure what could be going on and maybe I have nerve damage from surgery somehow. Where do I go from here? Am I stuck with this? I just want the pain to go away and I’ve tried anything and everything so I’d be happy to hear anyone’s input/ opinions. I’ve also read up on how endo can affect the sciatic nerve? Don’t know what truth there is to it but did the surgery hurt me in the long run? Hoping this goes away! 😣

    Hey everyone, I'm new here but for the past 2 years I've been having EXTREME pelvic pain & lower backaches. This gets so much worse during & before & after my period. This is accompanied by rectal pain, pain & pressure while pooping, constipation, nausea, & leg pains. My first period was when I was 10 & im 18 now. They've always been super irregular, sometimes they don't come at all or come 2 times a month & spotting. I've had pelvic ultrasounds to rule out cysts & nothing. Has anyone had this ?

    Many women experience endometriosis symptoms starting with their first period. When did your symptoms of Endo begin??

    Hey everyone, I'm new here but for the past 2 years I've been having EXTREME pelvic pain & lower backaches. This gets so much worse during & before & after my period. This is accompanied by rectal pain, pain & pressure while pooping, constipation, nausea, & leg pains. My first period was when I was 10 & im 18 now. They've always been super irregular, sometimes they don't come at all or come 2 times a month & spotting. I've had pelvic ultrasounds to rule out cysts & nothing. Has anyone had this ?

    Have you tried eliminating any foods from your diet to manage or relieve symptoms? What foods seem to trigger symptoms the most? Share any tips and tell us about your experiences!

    I was diagnose this past summer with endometriosis. I had a hysterectomy but i still feel the same. I don't know what else to do. I'm constantly sick I only get a week out of a month that I feel ok. It's just so much pain and fatigue. Has anyone got a hysterectomy done and still feel the same way no change not even a lil.

    I just recently got diagnosed this yr. I wanted to know what some of you ladies due to cope with all the pain and other symptoms. I been trying a lot of things. My symptoms get so bad at times I'm finding my some in the er constantly. I don't know what to do anymore. I been really depress lately. I just wanna feel better

    Use this space to tell us what type of articles you'd like to see more of on endometriosis.net! We would love to hear from you!

    Are you experiencing pain during intimacy? How is it affecting your relationships? Share any tips/advice! (Remember, this is a place to talk about personal experiences and you’re welcome to suggest products, but no sales or soliciting!)

    Hi All, I just want to ask if someone ever tried using medical cannabis as an alternative medicine? I've been reading some article about medical marijuana and how it can help you in terms of pain management, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this review on a certain strain from http://www.ilovegrowingmarijuana.com/platinum-kush/. It has a very high pain suppressing effect. Cbd and thc are also new to me and I don't even smoke. Alternatively, they've also find new ways to infuse cannabis on food and beverages. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

    Has anyone tried any Complimentary or Alternative Coping Strategies to help manage your Endometriosis symptoms? What did you try? What was your outcome? Did it work?

    Welcome to our community! We'd love to learn a little about what has brought you here.

    This forum board discusses very sensitive and highly emotional topics, such as primary and secondary infertility, InVitro Fertilization (IVF), Intrauterine Insemination, donor eggs/donor sperm, pregnancy loss, and miscarriage. All infertility related topics, including treatment, emotions, and questions, are welcomed. Please note: To keep this forum on-topic and supportive, pregnancy announcements, posts asking "Could I be pregnant?", and requests for pregnancy "success stories" will be removed. If you would like to share news of your pregnancy, please post in the General Discussions forum. Please remember to be kind and considerate in your responses.
Viewing 17 topics - 1 through 17 (of 17 total)