Hi A'driane, thanks for writing this post. How is your recovery going? I am considering a hysterectomy to hopeful support my autistic perimenopause ongoing nightmare, and really appreciated your words.
Hi Sam-I wound up having the hysterectomy but also my right ovary removed, which was actually quite validating because this whole thing started in Jan 2023 when I told my OBGYN that I believed there was something wrong with my right ovary, and was the source of the pain I was feeling/might be twisting on itself (ie ovarian torsion). She literally laughed at the time and said “you can’t even feel your ovaries, so how would you know it’s your right ovary causing the pain?” That started the imaging process (ultrasound, MRI) which revealed the other junk in my uterus, but showed my ovaries were “normal.” But I kept having HORRENDOUS, daily pain on my right side. Finally, the day of surgery, my surgeon (who was a GODSEND) looked me in the eyes and said “Look, I believe you about your pain-I’m going to go in there and look at your ovaries before we do the hysterectomy. If anything looks amiss, I’m just going to take out what needs to be removed-is that ok?” I agreed and guess what? MY RIGHT OVARY WAS FULL OF CYSTS. It was a MESS. And-the right side of my abdominal wall was fused to my intestinal wall, which was adding to the pain. I’m sharing that because I found that part of the experience to be incredibly affirming that I **know** my body. I knew there was something seriously wrong the whole time; this taught me that as a woman and as an autistic person to always trust myself, my intuition & what my body is telling me…and find doctors who will actually listen. (Easier said than done, I know).
Now, in terms of my recovery, it went relatively smooth. I have underlying autoimmune illnesses, so the surgery triggered some of those symptoms and caused a bit of a gastrointestinal flare up, but that got resolved with medication. Walking even a short distance (up the street and back, slowly increasing the distance over time) helped me so much.
What took the longest recovery-wise was actually getting my energy back. It took me about 6 months to start to have my full energy back and not be exhausted after the initial 6-8 weeks. I have been in perimenopause since age 36 (I’m 41 now) and I’ve definitely noticed an uptick in those symptoms, but it has been a challenge finding an OBGYN who is up to date on the latest peri/menopause research and will take my symptoms & questions about HRT/bio identical HRT seriously. A book I’d recommend is The New Menopause by Dr. Mary Claire Haver-it has really useful information in there.
I will also say that for me, post hysterectomy “swelly belly” was definitely real for me for about 3-4 months, and still happens from time to time depending on my level of activity. However it’s mostly just annoying when it comes to dressing in a sensory friendly, comfortable way, not painful. Pants are tricky for me because I sometimes can’t tolerate having anything around my waist, even if it’s elastic. Barrel pants w/higher waists seem to feel the best, but even then, after a while, I have to get out of them. I basically lived in comfy (knit or loose) dresses that I could dress up or down last year while I adjusted to my new normal physically.
This was a very long, detailed answer, but I hope it’s been helpful. I don’t regret it, am THRILLED I did it, and have relished being pain free on this front. The perimenopause is still a bit of a menace, but I find it easier to grapple with now that I don’t have periods, a crappy ovary, adenomyosis, fibroids, & other uterine masses making my life hell. In many ways, I feel stronger & so much freer than before. I can walk miles, paint, exercise normally, sex is better, etc.
Happy to answer any other questions & I hope you find what you need to end your ongoing nightmare, my friend. ♥️ Trust yourself!
Thanks for such a detailed response, A'driane! That is super helpful! It sounds like the payoff of your surgical menopause was definitely worth it. I am considering whether I may be progesterone intolerant which my Mirena IUD and Utrogestan are obviously not helping! I would gladly have a hysterectomy right now, just to know I had tried everything because I feel absolutely dreadful. I am already in a chemical menopause using Zoladex but with a surgical meno presumably I can drop the progesterone and just have add-back oestrogen and testosterone. Urgh. My bloating is currently beyond belief and so frustrating. Thanks for offering such a positive and well balanced perspective 💕
PS: I was lucky to see Prince in residence at the O2 Arena/Millennium Dome in London a million years ago. He was sensational! I was pre-autism and PMDD diagnosis and had a massive meltdown/rage at my husband because he didn't book us a table for dinner and how dare he because I was so hungry!! Oops.
Hi Adrienne, I’m a big fan of your paintings! Thank you for this beautiful list, I just had an oophorectomy (I’m 42) because of my breast cancer diagnosis last year. I love your firm words of encouragement as I too enter the crone phase. Thank you for this piece.
I also wrote a little bit about my experience here too. Sending continued healing vibes to you!
Hi Sarah-I’m so late to seeing your comment here (a year later, oof) bit thank you so much for sharing your experience and journey with me. I hope you have recovered well & fully and that the transition into the Crone phase has been generative and easeful for you. ♥️🫂🌻
Hi A'driane, thanks for writing this post. How is your recovery going? I am considering a hysterectomy to hopeful support my autistic perimenopause ongoing nightmare, and really appreciated your words.
Hi Sam-I wound up having the hysterectomy but also my right ovary removed, which was actually quite validating because this whole thing started in Jan 2023 when I told my OBGYN that I believed there was something wrong with my right ovary, and was the source of the pain I was feeling/might be twisting on itself (ie ovarian torsion). She literally laughed at the time and said “you can’t even feel your ovaries, so how would you know it’s your right ovary causing the pain?” That started the imaging process (ultrasound, MRI) which revealed the other junk in my uterus, but showed my ovaries were “normal.” But I kept having HORRENDOUS, daily pain on my right side. Finally, the day of surgery, my surgeon (who was a GODSEND) looked me in the eyes and said “Look, I believe you about your pain-I’m going to go in there and look at your ovaries before we do the hysterectomy. If anything looks amiss, I’m just going to take out what needs to be removed-is that ok?” I agreed and guess what? MY RIGHT OVARY WAS FULL OF CYSTS. It was a MESS. And-the right side of my abdominal wall was fused to my intestinal wall, which was adding to the pain. I’m sharing that because I found that part of the experience to be incredibly affirming that I **know** my body. I knew there was something seriously wrong the whole time; this taught me that as a woman and as an autistic person to always trust myself, my intuition & what my body is telling me…and find doctors who will actually listen. (Easier said than done, I know).
Now, in terms of my recovery, it went relatively smooth. I have underlying autoimmune illnesses, so the surgery triggered some of those symptoms and caused a bit of a gastrointestinal flare up, but that got resolved with medication. Walking even a short distance (up the street and back, slowly increasing the distance over time) helped me so much.
What took the longest recovery-wise was actually getting my energy back. It took me about 6 months to start to have my full energy back and not be exhausted after the initial 6-8 weeks. I have been in perimenopause since age 36 (I’m 41 now) and I’ve definitely noticed an uptick in those symptoms, but it has been a challenge finding an OBGYN who is up to date on the latest peri/menopause research and will take my symptoms & questions about HRT/bio identical HRT seriously. A book I’d recommend is The New Menopause by Dr. Mary Claire Haver-it has really useful information in there.
I will also say that for me, post hysterectomy “swelly belly” was definitely real for me for about 3-4 months, and still happens from time to time depending on my level of activity. However it’s mostly just annoying when it comes to dressing in a sensory friendly, comfortable way, not painful. Pants are tricky for me because I sometimes can’t tolerate having anything around my waist, even if it’s elastic. Barrel pants w/higher waists seem to feel the best, but even then, after a while, I have to get out of them. I basically lived in comfy (knit or loose) dresses that I could dress up or down last year while I adjusted to my new normal physically.
This was a very long, detailed answer, but I hope it’s been helpful. I don’t regret it, am THRILLED I did it, and have relished being pain free on this front. The perimenopause is still a bit of a menace, but I find it easier to grapple with now that I don’t have periods, a crappy ovary, adenomyosis, fibroids, & other uterine masses making my life hell. In many ways, I feel stronger & so much freer than before. I can walk miles, paint, exercise normally, sex is better, etc.
Happy to answer any other questions & I hope you find what you need to end your ongoing nightmare, my friend. ♥️ Trust yourself!
Thanks for such a detailed response, A'driane! That is super helpful! It sounds like the payoff of your surgical menopause was definitely worth it. I am considering whether I may be progesterone intolerant which my Mirena IUD and Utrogestan are obviously not helping! I would gladly have a hysterectomy right now, just to know I had tried everything because I feel absolutely dreadful. I am already in a chemical menopause using Zoladex but with a surgical meno presumably I can drop the progesterone and just have add-back oestrogen and testosterone. Urgh. My bloating is currently beyond belief and so frustrating. Thanks for offering such a positive and well balanced perspective 💕
PS: I was lucky to see Prince in residence at the O2 Arena/Millennium Dome in London a million years ago. He was sensational! I was pre-autism and PMDD diagnosis and had a massive meltdown/rage at my husband because he didn't book us a table for dinner and how dare he because I was so hungry!! Oops.
Hi Adrienne, I’m a big fan of your paintings! Thank you for this beautiful list, I just had an oophorectomy (I’m 42) because of my breast cancer diagnosis last year. I love your firm words of encouragement as I too enter the crone phase. Thank you for this piece.
I also wrote a little bit about my experience here too. Sending continued healing vibes to you!
https://open.substack.com/pub/sarahroos/p/letting-go-to-bloom-again?r=8f4fb&utm_medium=ios&utm_campaign=post
Hi Sarah-I’m so late to seeing your comment here (a year later, oof) bit thank you so much for sharing your experience and journey with me. I hope you have recovered well & fully and that the transition into the Crone phase has been generative and easeful for you. ♥️🫂🌻
Sending you love and healing energy. Take your time and know you are loved.❤️🙏🏾❤️
Sending all the love, all the hope for your good health, and for a future that holds tenderness and care.
Holding so much love and respect for you as you navigate ALL of this.
I so deeply appreciate it, thank you Jet ♥️♥️♥️
May this truth continue to set you free in all ways. And may your healing be complete. 😍
🙌🏾 i receive this, thank you Nikki! ♥️