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Partner with Endometriosis

  • By ConcernedPartner

    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.

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  • By Jessie Madrigal Moderator

    Hello @concernedpartner first of all, thank you so much for reaching out. By coming on to this forum and asking these questions, you are already being so supportive to your partner, and I can only applaud you for this.

    Yes, mood swings are common, anxiety and even depression, with endometriosis. I live with PMDD (an extreme for of PMS) and during my periods and right after, I would be in a very low mood, brought on by the incredible amounts of pain, brain fogginess and exhaustion.

    Chronic fatigue is also common in endometriosis patients. We struggle to sleep, due to hormonal fluctuations, hot flashes etc.

    Regarding hysterectomy recovery times, it really depends on each patient. But it’s not uncommon for patients to be walking around within a few days. I am attaching some links with information on hysterectomies and what it involves. Sadly, hysterectomies are not a cure, and do not guarantee that symptoms won’t come back, but many patients say that it was life-changing, for the good.

    On hysterectomy recovery: https://endometriosis.net/clinical/recovery-hysterectomy/

    With regards to surrogacy and other fertility questions, I can’t help much. Costs really depend on where you live. Personally, I am unable to carry a pregnancy to term, but I am not going to try IVF or anything like that. Surrogacy would be wonderful, but out of the question for me right now. Me and my partner have come to terms with that, but this is a very personal choice, completely unique to us. It’s important to be open to discussing this with your partner, and what each option would mean for her.

    I have friends that have had children with only one functioning ovary. Pregnancy would put all of her symptoms on hold, while she’s pregnant, until she stops breast-feeding. Some patients say that pregnancy has helped with their endometriosis, others see no difference, and symptoms come back as before.

    Regarding emotional support, you are doing SO VERY MUCH just by wanting to understand. Just say you care, listen to her. Be patient when she’s out of action, and remember that at the worst times, it’s her illness speaking, not her. Living with this illness is a very isolated and lonely affair.

    I’m including another link, this one of being a supportive partner, written by someone who could easily be you 😉 I hope it helps:
    https://endometriosis.net/living/support-partner-surgery/

    The smallest of gestures are the ones that help the most. Hold her hand when you’re with her. If you can cook for her do so, if you can do her grocery shop, do that too.

    Tell her we exist, tell her to seek us out for support if she needs to. We are also here for you. – Jessie (team member)

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    • By ConcernedPartner

      Thank you Jessie for your warm response. 🙂 Thank you so much for those links. I’m going to check them out.

      Prior to her being on the medication that stopped her period and put her into medically induced menopause, her moods would be really bad the week before her period, then bad but not as bad the week of her period, then the week after her period she would be in a good mood and be all loving and affectionate, then the cycle would repeat. So now that she’s on the meds, her mood for a while had been very moody, and easily irritable, and feeling down and depressed, and I’m not sure if this is because of the endometriosis, the medically educed menopause, or a combination of all of it and her hormones are going crazy and affecting her moods and feelings (I’m thinking that, plus the lack of sleep is most likely it). Whatever the case, is there anything I can do to help her with that?

      How would her moods generally be affected hormonally after the hysterectomy?

      Also, emotionally, for those of you who have undergone a hysterectomy, how has that affected you emotionally and psychologically?
      I ask because I know many woman might feel this is directly tied to their sense of womanhood, and even though logically it is understood the procedure was done for health reasons, I can completely understand how this would affect a woman emotionally and psychologically in a very profound way. So I wanted to ask for your experiences to try to get a better understanding so I can better prepare to be there for her and support her emotionally and be as sensitive to her needs and feelings/emtions however I can.

      Because of the nature of us being in a LDR, unfortunately I can’t be there in-person for her the way I want to be, but however I can be there for her and be understanding and support her emotionally, I want to be. This woman is the absolute love of my life, and if I could take this pain away from her and unto myself to spare her from it, I would do so without a moments hesitation. 🙁

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  • By Jessie Madrigal Moderator

    Hello @concernedpartner, yes, when hormones come into play, they cause a lot emotional distress and low moods. After stopping any type of hormonal medication there will be a period of adjustment, which can be easy for some, but very trying for others. The same applies if you’re on hormonal treatments, and after a hysterectomy, when again, hormonal levels have to settle. There are dietary changes that can help, and there are many books that have been written about this, which may be useful to read. Dr Jolene Brighten has a book called Beyond The Pill, that explains the effects any hormonal imbalances have in our bodies.

    I can’t talk much about hysterectomies because I haven’t had one. But yes, it can involve a massive emotional ordeal for some. Therapy can help a lot, and this is where I spend most of my money when it comes to my health.

    A big thing that partners must understand, and I know it can be hard, is that sometimes, there is nothing you can do to help. Absolutely nothing. My partner is a problem solver, he must find a solution to everything and help me as much as he can. But, with endometriosis, there are occasions in which all of his efforts are futile, and that’s OK 🙂

    We also did LDR for a while, and just him sending pictures of his surroundings or funny things he saw, and funny GIFs, and listening to me when I was a proper misery, all helped, so much. He would send me random gifts every so often, like a really soft blanket, or a stuffed owl that you could put in the microwave, heat it up and use as a warm pillow. Self-care gifts are the best 🙂

    Bad times just have to pass, until the good ones come again. You are doing so much just for caring this much 🙂 – Jessie (endometriosis.net team member)

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    • By ConcernedPartner

      Thank you @Jessie Madrigal. I can’t tell you how much it means to me that you’ve provided me with such great feedback. I read those links you provided me with, they were helpful; thank you for them.

      Yes, the LDR really affects me in general because I miss her so very much, but also because I can’t physically be there for her in-person to help and support her in a more substantial way, but I mostly keep it to myself because I don’t want to add on to all the emotional things that are affecting her and she’s already dealing with. She’s really stressed out and frustrated for a number of reasons, and I’m sure the hormones and lack of sleep are only amplifying that also, as well as having the surgery on her mind. Those are great suggestions for things that might help her emotionally with the LDR. We do text and send cute GIFs to each other throughout the day, and at times when we see things when we’re out and about that make us think of the other person, we do take a picture and send it to each other. I appreciate yours, and anyone else’s, suggestions as well. 🙂

      Any advice that could also be helpful to her when she’s moody, depressed, angry, and irritable? I try to be very cautious and mindful because I know that she’s feeling like that (even the little things can set her off and upset or irritate her), and I obviously don’t want to add to her frustration. Any advice on how best to navigate and deal with things when she feels like that? I asked her yesterday if she had heard back from the surgical coordinator, and that didn’t go over so well, that only just resulted in irritating her. 🙁 I wasn’t trying to be insensitive, I was only asking because I care and want to be supportive, and be on the same page with her and know what’s going on. I guess maybe I didn’t realize that might’ve come across as insensitive…

      I also feel so angry that the woman who I am so in love with, with everything in me, is suffering and I can’t do anything to take that pain away from her and help her in that way, so she doesn’t have to suffer and go through this. I know she’s a strong, independent woman, and I love her for that, and I don’t mean this in a condescending way, but I also can’t help wanting to take care of her and protect her…. isn’t that what people who love, and are in love, want to do for their partners? So I completely understand how your partner feels Jessie.
      I have told her many times, that I want to be there for her, and walk through everything in life together side-by-side with her, but I know when dealing with all of that pain, that might not really help or mean much other than to irritate or annoy her, depending on her mood and how she’s feeling. I just try to keep in mind when she gets upset or easily irritate, that her hormones are all over the place, and I just try to be very patient and understanding, and as sensitive and as supportive as I can, whether she sees that or not.

      I also feel guilty about thinking about children and surrogacy, instead of focusing 100% of my thoughts on her physical and emotional pain that she’s dealing with right now, and in the future. She and I previously discussed surrogacy as an option we would be open to exploring if it is feasible, but right now my thoughts should be completely on her pain physically and emotionally, as well as the surgery (and I do think about all of that and try to be understanding and supportive as possible for her), but I feel so selfish that I’m also thinking about this other aspect. 🙁

      Thanks for being so supportive and understanding, and for your wonderful responses and feedback. Your advice and help are greatly appreciated.

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  • By ConcernedPartner

    My S.O. is going in for her hysterectomy tomorrow. I know she’s very scared, nervous, anxious, really worried, stressed, and a deluge of so many other emotions. I feel all of this also for her, and it’s all I have had on my mind, but obviously it’s even so much more intense for her. I so badly wish I could be there for her in-person to comfort her, support her, and take care of her… but unfortunately due to the nature of our LDR and our situation, I can’t right now. There’s nowhere else in this world I’d rather be, than by her side. 😞

    I have some questions to help me to understand things better, so I can better support my partner.

    For you ladies who have had hysterectomies, how has it helped with your endometriosis afterwards? Have you found a lot of relief? Did it stop the Endo and the pain, and all the other issues?

    For those of you who suffered with severe mood swings and depression due to the hormones from your endometriosis, how have you felt after the hysterectomy? Have you found that you no longer are feeling that depression, or severe mood swings, or have you noticed no change or relief with that?

    I understand how intrinsically linked a woman’s ability to have children is to her sense of feminity and womanhood. How have you ladies felt emotionally, psychologically, and physically after your hysterectomy? How has it affected you?

    What was the recovery afterwards like? How long did it take for each of you, and what was the most challenging, and difficult part?

    I want to be as supportive and understanding to my love as much as I possibly can. Thank you all for your answers, your advice, and your support.

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    • By Jessie Madrigal Moderator

      Hello @concernedpartner

      I haven’t had a hysterectomy, but some of our advocates have. I am including some links to their own personal stories, and experiences with this type of surgery.

      Hopefully these stories can give you an idea on what your partner may go through in the near future.

      https://endometriosis.net/living/my-hysterectomy-recovery/
      https://endometriosis.net/clinical/hysterectomy-weight/
      https://endometriosis.net/clinical/recovery-hysterectomy/

      I hope these help. I wish your partner a speedy recovery. Reach out to us whenever you need to 🙂 – Jessie (team member)

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    • By ConcernedPartner

      Thank you so much for the support and advice. I’ll take a look at those articles.

      My S.O. had her hysterectomy a few days ago, and is resting in a recovering. I know she is in a great deal of pain, and she is so strong that she is just doing what she has to deal with it, and I so badly wish I could be there in-person with her to support her, comfort her, and take care of her… more than anything else, I just want to be by her side. 😞

      Not really sure if it’s because of the physical pain and trauma she is experiencing and trying to recover from, or if it’s also emotional/psychological things she’s experiencing and trying to deal with, or probably a combination of both; but she really doesn’t want to talk much. I know this was a very serious surgery and can affect a woman in many different ways, and she needs time to deal with all of it. Hopefully she will open up and talk to me about what she’s is going through. Whatever she is going through, I just want to be patient, understanding, and supportive for her.
      She doesn’t really feel like texting/talking on the phone much, so I just try to keep the conversation when we do text a bit light, and try to do whatever I can to pick her spirits up a bit and make her smile by sending her GIFs and pictures, links to articles/videos that I think she would like, and I message her throughout the day even if she doesn’t respond so she knows that I’m constantly thinking about her and she’s always on my mind.

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