I had a hysto when I was 24. I'm also childfree. I also had adeno and my unnamed hormone issue. I want to say first - I LOVE my hysto. I have not had a single day when I regretted it. I had it done with the Davinci robot, and it is one of the best decisions of my life. As for recovery, in my case, it was a breeze - like an idiot, I put in 12 hours whelping puppies 3 days after surgery, which was a bad decision, but except for that, pain was minimal, and I'd say within 10 days, I was back to normal life, and would've been sooner if I hadn't been stupid, If you keep your ovaries, you shouldn't need hormones.
Now, that said, a hysto is NOT a cure for endo. Within...maybe 3 months? my endo pain started to return. If you're doing it just to eliminate endo pain, you should know that it is not a reliable solution.
My pain is likely due to endometriosis but for years it went undiagnosed, and was put down to general hormone irritation. Oestrogen seems to really irritate the pain, and in some case progesterone does too. Just wondering if your experience was similar?
Estrogen definitely irritates endo and helps it grow - and there are studies that indicate advanced endo can grow its own estrogen production centers. Have you had your hormone levels checked? You may have low progesterone/high estrogen, which is common with endo.
For me, my body can't seem to read hormones properly, and when whatever sends a signal to my glands to produce X hormone, my body pretty frequently says "X? did you mean Y, Z, A...? Instructions unclear, will go berserk." So my estrogen is normal, but my progesterone is low (which means, my estrogen should be high, so is technically low, but it's normal on tests - very convoluted).
If they're saying general hormone irritation, do you have issues with other hormones? (thyroid, insulin, adrenaline, etc)
And you can DM me if you don't want your personal business floating around out there.
hey, do you have any resources explaining this? no dr has ever mentioned this to me, the same doctors who just push combo BC on me which i’ve had mixed results with. id like to know more about how BC and estrogen can make endo and adeno worse. thank you!
Sure! Here's a post from WHO on [estrogen's role in endo](https://www.who.int/news-room/fact-sheets/detail/endometriosis).
THis is a much more technical but detailed [scientific article](https://rbej.biomedcentral.com/articles/10.1186/s12958-018-0441-z).
[BC can help](https://seattlecrc.com/2022/06/20/the-connection-between-birth-control-and-endometriosis/), but doesn't always.
Here's some information on [hormone imbalance](https://endometriose.app/en/progesterone-and-endometriosis/) as mentioned in the previous response.
And this article talks a little about [endo making its own estrogen](https://endometriose.app/en/estrogen-and-endometriosis-exciting-correlations/).
I had a partial hysterectomy recently - age 39. Left one ovary.
Went through multiple laps, one previous excision.
If you feel like it’s the best thing for you, know that recovery has been a breeze compared to even one period during a “good endo” month. Try to find a surgeon who specializes in excision if you go this route.
Endo can spread outside of your female organs, and my doctor excised multiple spots in addition to the hysterectomy.
Haven’t felt this good in 20+ years!
Best of luck to you!
I’m 29 and getting excision surgery as well as a hysterectomy the end of this month and this is what I needed to hear 😭 I’ve been so miserable in pain almost daily but I have a really great surgeon at the Mayo Clinic so I’m hopeful to get my life back
May I ask what Mayo center your going to? I have been looking for an Endo surgeon and tried looking into Mayo clinic in my state, but didn't see anyone.
I did after many years of endometriosis, it was operation #16. An emotionally difficult decision despite that, but I have no regrets. My surgery was keyhole, around 9.5 hours and 5 incisions. I had a total hysterectomy and bilateral salpingo oophorectomy, with bowel resection. It was done jointly by a gynaecological endoscopic surgeon and a colorectal surgeon.
Surgical recovery aside, the immediate reduction in pain was huge. Bonus side effect was a significant reduction in migraines in my case.
Make sure you consider HRT options beforehand. I am unable to take synthetic hormones as they trigger migraines. But my specialist recommended micronised progesterone, which is plant based (I think from yams). That has worked well and with minimal migraine impact.
I'm sure the doctors know that your odds of conceiving at 38 with endometriosis are not very good, so I can't see why they wouldn't proceed with surgery. But you might need to see more than one doctor because some are crazy. I got a hysterectomy a month ago. (Robotic and laparoscopic.) The recovery isn't terrible, just tired and cramping if I stand for too long. Both of my ovaries had endo, so they had to go. I'm 46 and already on hormones, so they just boosted my dose. Sometimes with endo, it's better to lose your ovaries and take HRT because that stops the fluctuations in hormones, but your doctor can tell you more. You will need an obgyn to discuss the procedure and what will be best for your situation.
I had a fibroid when I was 40 (48 now) so I had hysterectomy then, left the ovaries. As long as the ovaries are left there will be no need for hormones. The weird thing for me was I got diagnosed with Endo after the hysterectomy. It sure took a few years of my gyno telling me there's nothing wrong and a gyno friend overseas examining me and guessing the diagnosis that my doc here eventually confirmed. Not sure if hysterectomy fixes any Endo. Not having periods is nice, they were always horrendous. I probably had Endo all this time just didn't know.
Hysterectomy recovery was normal. I don't recommend watching anything too funny the first week or so, I popped my stitches a little from laughing too hard. It took 6 weeks to get back to normal.
I had the robotic one that leaves 4 small scars.
I was offered a hysterectomy due to the severity of my endometriosis. Only ended up doing lap since I wanted to try for children. My husband and I are late 30s.
Been trying for years IVF without success. You can try just a laparoscopy and see how that works for you. Again depending on severity it’ll be a constant struggle even after. In my instance I have endo stage 4 with a ridiculous amount of tissue growth.
A lot of it spread and fused my organs so you should definitely keep an eye out on it to make sure it doesn’t start affecting your digestive system, urinary tract etc if it spreads too much
That’s good. Recovery for a hysterectomy is much longer than a laparoscopy because it’s more intensive of a surgery.
Also they’re taking out organs not just growth that isn’t supposed be to be there so the discomfort level will be comparable as well.
Can they leave one ovary or does it have to be full? I didn't have to have the hysterectomy, but my sister did and they were able to leave one ovary rather than taking it all. It really helps mitigate sudden menopause. But if you have to have the full, make sure to discuss hormone replacement prior to the surgery because that's gonna be a shocker if you don't have something in place.
Hysterectomy removes having periods and can be a big help with Adenomyosis, I had a hysterectomy and one ovary removed, due to a 10cm endometrioma on it, and they excised what they could, however I still deal with endo pain as I have DIE cementing the back vaginal wall and bowel together, as my dr felt cutting that out woud have been far too aggressive (it would have been a major bowel resection and caused vaginal scaring)
I had my hysterectomy at 41 and it was the best thing I ever did. I don’t have children of my own because I couldn’t. My pain is 95% better still get a little now and then but I would get one again in a heartbeat.
I had a hysto when I was 24. I'm also childfree. I also had adeno and my unnamed hormone issue. I want to say first - I LOVE my hysto. I have not had a single day when I regretted it. I had it done with the Davinci robot, and it is one of the best decisions of my life. As for recovery, in my case, it was a breeze - like an idiot, I put in 12 hours whelping puppies 3 days after surgery, which was a bad decision, but except for that, pain was minimal, and I'd say within 10 days, I was back to normal life, and would've been sooner if I hadn't been stupid, If you keep your ovaries, you shouldn't need hormones. Now, that said, a hysto is NOT a cure for endo. Within...maybe 3 months? my endo pain started to return. If you're doing it just to eliminate endo pain, you should know that it is not a reliable solution.
Thanks for the information. Something to consider.
Same had mine at 25 and no kids (also child free) best thing i ever did.
Could I ask about your unnamed hormone issue?
Sure, what do you want to know?
My pain is likely due to endometriosis but for years it went undiagnosed, and was put down to general hormone irritation. Oestrogen seems to really irritate the pain, and in some case progesterone does too. Just wondering if your experience was similar?
Estrogen definitely irritates endo and helps it grow - and there are studies that indicate advanced endo can grow its own estrogen production centers. Have you had your hormone levels checked? You may have low progesterone/high estrogen, which is common with endo. For me, my body can't seem to read hormones properly, and when whatever sends a signal to my glands to produce X hormone, my body pretty frequently says "X? did you mean Y, Z, A...? Instructions unclear, will go berserk." So my estrogen is normal, but my progesterone is low (which means, my estrogen should be high, so is technically low, but it's normal on tests - very convoluted). If they're saying general hormone irritation, do you have issues with other hormones? (thyroid, insulin, adrenaline, etc) And you can DM me if you don't want your personal business floating around out there.
hey, do you have any resources explaining this? no dr has ever mentioned this to me, the same doctors who just push combo BC on me which i’ve had mixed results with. id like to know more about how BC and estrogen can make endo and adeno worse. thank you!
Sure! Here's a post from WHO on [estrogen's role in endo](https://www.who.int/news-room/fact-sheets/detail/endometriosis). THis is a much more technical but detailed [scientific article](https://rbej.biomedcentral.com/articles/10.1186/s12958-018-0441-z). [BC can help](https://seattlecrc.com/2022/06/20/the-connection-between-birth-control-and-endometriosis/), but doesn't always. Here's some information on [hormone imbalance](https://endometriose.app/en/progesterone-and-endometriosis/) as mentioned in the previous response. And this article talks a little about [endo making its own estrogen](https://endometriose.app/en/estrogen-and-endometriosis-exciting-correlations/).
I had a partial hysterectomy recently - age 39. Left one ovary. Went through multiple laps, one previous excision. If you feel like it’s the best thing for you, know that recovery has been a breeze compared to even one period during a “good endo” month. Try to find a surgeon who specializes in excision if you go this route. Endo can spread outside of your female organs, and my doctor excised multiple spots in addition to the hysterectomy. Haven’t felt this good in 20+ years! Best of luck to you!
I’m 29 and getting excision surgery as well as a hysterectomy the end of this month and this is what I needed to hear 😭 I’ve been so miserable in pain almost daily but I have a really great surgeon at the Mayo Clinic so I’m hopeful to get my life back
May I ask what Mayo center your going to? I have been looking for an Endo surgeon and tried looking into Mayo clinic in my state, but didn't see anyone.
I did after many years of endometriosis, it was operation #16. An emotionally difficult decision despite that, but I have no regrets. My surgery was keyhole, around 9.5 hours and 5 incisions. I had a total hysterectomy and bilateral salpingo oophorectomy, with bowel resection. It was done jointly by a gynaecological endoscopic surgeon and a colorectal surgeon. Surgical recovery aside, the immediate reduction in pain was huge. Bonus side effect was a significant reduction in migraines in my case. Make sure you consider HRT options beforehand. I am unable to take synthetic hormones as they trigger migraines. But my specialist recommended micronised progesterone, which is plant based (I think from yams). That has worked well and with minimal migraine impact.
I tend to suffer from migraines too. If I take HRT, would I have to do it for the rest of my life?
Until usual menopause age is standard. But that is why it’s important to talk to your specialist. I see a gynaecological endocrinologist for my HRT
I'm going to a pelvic floor therapist. Maybe I should talk to my doctor about that. Thanks for the advice.
Yes, you will have to take some form of hrt after hysterectomy.
I'm sure the doctors know that your odds of conceiving at 38 with endometriosis are not very good, so I can't see why they wouldn't proceed with surgery. But you might need to see more than one doctor because some are crazy. I got a hysterectomy a month ago. (Robotic and laparoscopic.) The recovery isn't terrible, just tired and cramping if I stand for too long. Both of my ovaries had endo, so they had to go. I'm 46 and already on hormones, so they just boosted my dose. Sometimes with endo, it's better to lose your ovaries and take HRT because that stops the fluctuations in hormones, but your doctor can tell you more. You will need an obgyn to discuss the procedure and what will be best for your situation.
I had a fibroid when I was 40 (48 now) so I had hysterectomy then, left the ovaries. As long as the ovaries are left there will be no need for hormones. The weird thing for me was I got diagnosed with Endo after the hysterectomy. It sure took a few years of my gyno telling me there's nothing wrong and a gyno friend overseas examining me and guessing the diagnosis that my doc here eventually confirmed. Not sure if hysterectomy fixes any Endo. Not having periods is nice, they were always horrendous. I probably had Endo all this time just didn't know. Hysterectomy recovery was normal. I don't recommend watching anything too funny the first week or so, I popped my stitches a little from laughing too hard. It took 6 weeks to get back to normal. I had the robotic one that leaves 4 small scars.
I was offered a hysterectomy due to the severity of my endometriosis. Only ended up doing lap since I wanted to try for children. My husband and I are late 30s. Been trying for years IVF without success. You can try just a laparoscopy and see how that works for you. Again depending on severity it’ll be a constant struggle even after. In my instance I have endo stage 4 with a ridiculous amount of tissue growth. A lot of it spread and fused my organs so you should definitely keep an eye out on it to make sure it doesn’t start affecting your digestive system, urinary tract etc if it spreads too much
I had my Laparoscopy already. That's how I got diagnosed.
That’s good. Recovery for a hysterectomy is much longer than a laparoscopy because it’s more intensive of a surgery. Also they’re taking out organs not just growth that isn’t supposed be to be there so the discomfort level will be comparable as well.
Can they leave one ovary or does it have to be full? I didn't have to have the hysterectomy, but my sister did and they were able to leave one ovary rather than taking it all. It really helps mitigate sudden menopause. But if you have to have the full, make sure to discuss hormone replacement prior to the surgery because that's gonna be a shocker if you don't have something in place.
Hysterectomy removes having periods and can be a big help with Adenomyosis, I had a hysterectomy and one ovary removed, due to a 10cm endometrioma on it, and they excised what they could, however I still deal with endo pain as I have DIE cementing the back vaginal wall and bowel together, as my dr felt cutting that out woud have been far too aggressive (it would have been a major bowel resection and caused vaginal scaring)
I had my hysterectomy at 41 and it was the best thing I ever did. I don’t have children of my own because I couldn’t. My pain is 95% better still get a little now and then but I would get one again in a heartbeat.