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I finally was able to go through with this. I am still a young woman, but I have adenomyosis and endometriosis. I am infertile. I have had two chemical pregnancy miscarriages that I don’t even bother mentioning anymore. I have lived in high levels of pain every day since my mid twenties, had 3 major surgeries to try and clean up the endometriosis, the last of which was pretty darn successful. But my uterus is diseased. It’s big and “boggy” instead of small, firm, and smooth. It had a large blood blister on the surface of it during my last big surgery that the surgeons said they had never seen before.

I’m exhausted. I’ve had to beg, fight, and scream to get the care I’ve had so far, no one took me seriously for years. Now without hormonal suppression I am getting my periods every 15-20 days for 6-7 days at a time, they are unbelievably heavy, clotted, and painful beyond belief. Luckily I am on progesterone to suppress them because I literally couldn’t live like that anymore, I was anemic and had low iron stores in my bones to make more blood cells, never mind the social/physical difficulty of heavily bleeding 50% of the time.

Today I went to the appointment I have waited since January for. The doctor spent an hour and 15 minutes with me, more time than probably all my other appointments combined through my life about Endo. I cried about my pain, I cried about how tired I am, I cried about giving up the miracle organ that is a uterus. But I’m going to do it. I can’t live in pain anymore. The surgeon told me when she saw my uterus last time she immediately wanted to remove it. That was 4 years ago and I’m done.

Goodbye uterus, thanks for not a goddamned thing.

I finally was able to go through with this. I am still a young woman, but I have adenomyosis and endometriosis. I am infertile. I have had two chemical pregnancy miscarriages that I don’t even bother mentioning anymore. I have lived in high levels of pain every day since my mid twenties, had 3 major surgeries to try and clean up the endometriosis, the last of which was pretty darn successful. But my uterus is diseased. It’s big and “boggy” instead of small, firm, and smooth. It had a large blood blister on the surface of it during my last big surgery that the surgeons said they had never seen before. I’m exhausted. I’ve had to beg, fight, and scream to get the care I’ve had so far, no one took me seriously for years. Now without hormonal suppression I am getting my periods every 15-20 days for 6-7 days at a time, they are unbelievably heavy, clotted, and painful beyond belief. Luckily I am on progesterone to suppress them because I literally couldn’t live like that anymore, I was anemic and had low iron stores in my bones to make more blood cells, never mind the social/physical difficulty of heavily bleeding 50% of the time. Today I went to the appointment I have waited since January for. The doctor spent an hour and 15 minutes with me, more time than probably all my other appointments combined through my life about Endo. I cried about my pain, I cried about how tired I am, I cried about giving up the miracle organ that is a uterus. But I’m going to do it. I can’t live in pain anymore. The surgeon told me when she saw my uterus last time she immediately wanted to remove it. That was 4 years ago and I’m done. Goodbye uterus, thanks for not a goddamned thing.

27 comments

oh, my. I'm so glad you'll be on the path to healing. I am so sorry for your loss and all you've had to endure. Much love to you.

Thank you. I’m very very ready for this. They told me it’s a good plan for me. They validated everything about my story and struggle. All I can do today is cry from all the overwhelming emotions and relief.

I wish you the very best. I made that choice at age 42 and never regretted it for one single second - but I had three children, so I understand that this is more difficult for you. You will heal, you will recover, and your quality of life will be immensely improved. How long until your surgery?

I am a bit younger than that, but I have been considering it for a long time now. We’ve tried to have a baby and are old enough now that we don’t want one. Surgeries where I live are cancelled due to covid but should resume soon. The said sometime in the next year, and in the meantime I will stay on my medication to keep things at a dull* roar. Thanks for your message

Edit* it said full 😂 autocorrect 🙄

I hope the surgery goes really well and you recover fast. I'm sorry you had to go through so much anguish to get what you need.

The light at the end of the tunnel is near and an end to your suffering in sight.

Here’s to hoping for a smooth surgery and great outcome. 🥰

Thank you, I truly hope this is the end of the tunnel. I’ve always been like “this next surgery will do it” then the next, then the next... I truly think this is it though, and my surgeon says our goal is 80-90% of my baseline functioning which is probably at like 60-70% at the moment compared to healthy women.

I am so sorry you have had to deal with all this pain and suffering for so long. I would make the same decision. Good luck with your surgery!

Thank you, I am truly feeling the weight of all of these years of a disease burning through my body and the damage that has caused today. My uterus is pulsating and heavy and painful since I am paying attention to it, I usually don’t even notice the pain. The mind is truly an amazing thing. Thank you for your well wishes sister.

Did you see the youtube of the woman with the same issue who told them she was trans just to get the surgery?

yeah, such privilege. I'm glad you finally got their attention.

No I haven’t! Trans men have many more treatment options available to them that are very successful, lots of drugs that are fantastic for suppressing endo pain also cause masculinization so they aren’t used. I was on one called Danazol for several years and had to stop for that reason. Many of them don’t want their uterus’. They claim they have it worse than woman in a lot of ways (so surprising, everything is worse for trans people all the time) but really they benefit in a lot of ways women don’t. Even presenting looking like a man probably helps them, men’s pain is taken more seriously.

I resent trans men for destroying the sisterhood that existed before they came along with their “inclusive language” demands. I have been removed by countless groups for refusing to not say “ladies” in my posts or call it a woman’s disease. They can’t help but tear everything around them apart because they can’t stand themselves. It’s been devastating for me to lose my sisterhood and the language that binds us together while on such painful journeys. I don’t give a shit what they identify as, they’re women, with a women’s disease,l. A whooping 12 men have been diagnosed with endometriosis while 10% of the female population has it. 🙄🙄🙄🙄🙄🖕🏻

I’m so glad that you have a supportive team in place! It is such a difficult decision to get a hysterectomy, but I wish you many many many happy, pain free years ahead.

I am so glad too! I have been dismissed so much through my life, I’m always so nervous about how an appointment is going to go.

i'm so sorry you had to go through all this suffering! wishing you a smooth surgery and speedy recovery so you can soon enjoy a pain free life, sister! 💕

This life has truly been a test of how much pain one person can endure, I pray there is no life after death to test me further 😂 thanks so much sister 🥰

I feel this. I almost never hear women talk about painful, heavy and FREQUENT periods. They are so debilitating--I have them too. I hope the hyso gives you the relief you need.

I’m so sorry you are going through that. Mine only became erratic in the past year or two, before that they were 28 days like clockwork. I couldn’t do it. Do you have any plans to try and suppress them? I even got so tired of the smell of blood and going through endless pads. And my poor skin 😭 the blood ate away at it. Maybe you are luckier and can wear tampons? Hugs to you

I suppressed it with continuous BCP for about a decade but that really hurt my mental state. I have a more resilient mental state without birth control pills, even with all the pain--I can hold a spark of hope that my feelings will change, whereas they never changed on continuous BCPs. I avoid wearing tampons if I can help it (sometimes certain clothes demand them, but I'll avoid going out most of the time if I can) because they make the pain of all the menstrual stuff and my interstitial cystitis worse; but, as you know, constant pads feel awful and like diapers, plus the smell. I'm not brave enough yet to get a hysto--I worry about the side effects and whether I'd even feel better enough for it to be worth it with my other health problems.

I'm glad you've gotten to that point of clarity and I hope it brings you some peace. Make sure you can arrange some support while you recover, even if it is just you helping out the future-you with frozen meals and clean laundry. I didn't have a lot of support from others after my endometriosis excision, but I did everything I could to help myself and that turned out to be enough.

Honestly I feel awful on hormones too, i have found progesterone only to be more bearable after the first few months of feeling bad. I was super desperate to go on it in the first place though, I was so sick I was at like 20% functioning. If you ever get that desperate it might be worth a try, I have found it less emotionally/mentally destabilizing. My spouse will help me. My excision was the worst experience I’ve ever had, I might even ask to be kept overnight this time. I did order meal kits and made a few premade things.

Sending you solidarity, good wishes and love - and virtual hugs if you want them. I'm facing the same operation soon (probably in a few months) and feeling a jumble of grief, fear and relief that I now have a name for the problem and know what to do about it. I'm so sorry you had to endure those years of torment but hope you get your surgery soon, have a quick recovery and that the next phase of your life is wonderful.

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