PCOS & Endometriosis

So. I went to see my doctor today and i find out i have so he tells me that I should consider having a hysterectomy… I’m only 26 HOW IS THIS POSSIBLE!

    • Get you a second opinion ladybug. I have Fibroids & that is all the first doctor wanted to do. Hugs & best wishes to you.
    • Sometimes there are other things they can do. I would get a second opinion.
    • I had one at 24…wish I would have gotten a second opinion but hindsight is 20/20… Always get a second and sometimes 3rd opinion when making huge decisions like this!
    • Ik I’ve read that allowing your PCOS to go untreated can cause endometriosis 🙁
    • How could he tell you that? You can only diagnose Endo through surgery.
    • Hes been treating my PCOS since i was 16 and i recently had surgery to remove some of my cyst and he did a D&C and that’s when he said that the lining of my uterus was growing outside.
    • Oh ok makes sense. Did he remove it? I have stage 3 endo and my doctor removed all of the endo and a cysts that I had which gave me 6 months to try and conceive but it failed because my left tube is blocked.
    • He did but he couldn’t remove all of the cyst because they’re too many and he said one of my tubs were completely blocked so he flushed it.
    • Hmm i would get a second opinion most cysts go away on there own…
    • I have it too. I’m 28, the doctor refused to do one unless all options were exhausted first . I would get a second opinion. It’s still a serious surgery.
    • To be honest hysterectomy, albeit severe options wise, is truly the only way to get rid of endo. Yes there’s temporary options such as chemical menopause, surgical removal of fibroids etc but they’re merely temporary.
    • I had hysterectomy for uterine cancer and when they did the debulking part (basically gutting you and washing you out) they found endo on my lungs!!! By all means get a second opinion as that’s important but it really does depend on what’s going on internally and how bad the endo is xxxx
    • Ohh Hun horrid I’ve only discovered in the last 3 yrs I had that but I’ve been really ok.
    • If it’s not too bad (depending on the stage) you can have them go in and remove the endometriosis BUT it will come back and likely you will end up needing to have one.
    • Don’t do it!
    • Please get a 2nd opinion..my daughter was told something similar at 16 and she wouldn’t have children…now we have a beautiful grand baby 4yrs…she’s having more but thanking God for her Miracle…praying
    • Please get a 2nd opinion a hysterectomy doesn’t mean the endo will go away it can still keep coming back after a hysterectomy according to research done by myself and confirmed by my doctor.
    • I find out I have mild endometriosis, fibroid, and a polyp during a hysteroscopy/laparoscopy 6 months before my last IVF treatment. No dr ever checked me for it before. They suspected my sister had it because she managed to get pregnant on her own following 3 IVF treatments. Pregnancy can reverse endometriosis. I’d get a second opinion.
    • You should tell him he should consider getting a hysterectomy! 😒 Defiantly find a new doctor! ❤
    • I was diagnosed with pcos when I was 17.. told i wouldn’t be able to have kids and would have to have a hyst by time I was 26..I was diagnosed with endometriosis at 28.. I’m now almost 33 I have a 4 year old son and 24 weeks pregnant with a little girl…GET A SECOND OPINION!!!!
    • Gives me hope congratulations.

So despite pcos and a couple of large cysts I’ve always had a normal sex life. However yesterday I experienced extreme pain to where I couldn’t sit down, walk properly, use the bathroom or even just move in general without awful pain.. I’m wondering if it’s endometriosis and I’ve just never experienced major symptoms? Or can rupturing a cyst cause vaginal pain as well? (I’ve ruptured cysts before but it’s never hurt anywhere else but my lower belly)

  • I am not sure of your question… But i do know using Turmeric and detoxing hormones decreased my PCOS drastically , Hope you find the awnser your looking for though.
  • In my personal my PCOS has changed as I’ve gotten older. I went to the ER for pain I was having and it didn’t feel like the normal pain I have with PCOS, and I was checked out to find it was a cyst rupture, which I’ve had many times, but this pain was very different. PCOS changes in life. Hope this helps.
  • Thanks ladies. I’m overdue for my yearly so maybe this is my sign to just go in and get it over with. Gotta love PCOS, there’s always something new going wrong.

Hey ladies I had a laparoscopy done yesterday and they removed a egg sized cyst from my ovary and a small amount of endometriosis from my uterus I’m not in much pain just can’t seem to get this gas moving it has my shoulder in so much pain! Any advice on what to do for this shoulder gas pain?

  • Okay.. how do u know own if it’s gas pain?! My sil was telling me about it and totally though she was just messing with me… but now I’m like.. idk how to tell what it is if that makes sense.
  • CO2 that they fill your stomach with moves threw you body it can vary from your chest or shoulder from u sitting up after surgery.

All the time in fertility involved groups, I see post after post about friends getting pregnant. I think I’ve seen just about every scenario.

– “I fell pregnant and I just don’t know how to tell my best friend. She can’t have children and this will crush her.”
– “My best friend and I have both struggled with infertility for years. I’m now pregnant and she isn’t yet. How do I tell her? Should I wait? I’m afraid this will ruin us.”
– These are always the worst to me. “Well, looks like my friendship is over. My best friend can’t handle my pregnancy.”

Such posts always hit HARD for me. In high school, my best friend since kindergarten fell pregnant. Despite countless odds against her, she became the best mother I know. That was seven years ago and she’s been unable to conceive since, primarily due to endometriosis. Surgeries, meds, diet, you name it, nothing has worked. I’ve been with her every step of the way, a truly gut-wrenching journey.

When I was out-of-the-blue diagnosed with PCOS and infertility myself last year, we were both stunned. For years, she would make comments like, “Girl, thank God you won’t have to go through anything like this. I wouldn’t wish this on anyone.” Well, next thing we knew, there we were, accompanying one another at infertility appointments, crying, celebrating the “small” victories, on the phone for hours, researching together — the list goes on.

As much as we bonded through our pain, it wasn’t all “just that simple” or peachy. It took a LOT of honesty on both of our parts to get through it together…and it still does. What do I mean? Well, on her end, it became mostly guilt. “You may never have one child of your own, and here I am complaining that I don’t have more children.” From my side: “But I have PCOS and insulin resistance. My case is much more treatable than yours. What if I get pregnant and you don’t? What if I get pregnant first?” And that’s just scratching the surface.

Well, I’m now 11 weeks pregnant. When I tested the day before my husband’s birthday, I did it with her on the phone. Later, when he was home and we got the confirmation call, we made it a point to have her over and she was right there screaming and in tears with us. Her excitement was truly genuine and unreal. But, then set in the worry…the wondering…the sadness. I didn’t want to be pregnant without her. I didn’t want to overwhelm her. What if she didn’t want to hear about it? What if I said too much? What if I didn’t say enough? I wanted her to be involved, but would she prefer to keep her distance?

Since my conceiving, even though she has repeatedly reassured me that everything is fine, I’ve still never felt quite right about it. In no way has our friendship changed, but it’s still that “in the back of your mind” type thinking 24/7. But, today, finally all of that was put to rest. For my birthday, she gave me a letter, the most heartfelt, four-page letter you could imagine. She did much more, but I’ll spare you since this is already a novel enough! Anyway, typically, I wouldn’t share something so personal, but I feel its message is important. THIS is true friendship.

My best friend has endo. She has one child and is now facing secondary infertility. I have PCOS. I beat infertility. I am now expecting my first child. She shares my joy and sorrow, I share her joy and sorrow. At the end of the day, we want only the best for one another, as it should be. I know not all similar stories have such “happy endings,” but I hope my message is clear. Infertility destroys enough. When at all possible, don’t let it destroy your relationships, too. Overcome the bitterness and embrace every victory.

  • Wow, this actually put tears in my eyes. This is so beautiful. Cherish your friendship and that precious miracle baby. Congratulations.
  • This is exactly something I needed to read today. Thank you.
  • Just beautiful and just the way it should be. Thanks for sharing.
  • That is so beautiful. Everyone deserves to have a best friend like that. Thank you for sharing with us.

So I’ve recently been diagnosed with I’m in so much pain right now I want to cry!! That being said I’m also haveing to get my uterus taken in out in a month to relieve some of said pain I’m only 26 years old how am I supposed to deal with all this at once…. also does anyone have any suggestions for the pain please I need help

  • Have you had d&c and checked for fibroids and polyps before you went to that step?
  • I did everything but I’m lucky I actually had my two beautiful daughters before I got diagnosed with pcos and I have been in pain for over 6 months and it has cost me two jobs the only way to solve the pain is a hysterectomy
  • Well yes then that’s understandable. I’m sorry you are going through that at still such a young age. I’m 25 myself and I’ve done these procedures to see if it helps with the long and frequent ones sometimes. I’ve had 1 cycle since surgery and that felt like one of the worst in my life. I was then questioning wtf did I do lol
  • That’s what we thought for myself! My specialist has put me on a mini pill which often has been known to help ease the symptoms. It took a while but I am now pain free for the past almost 5 months. Before then I felt hopeless. It was causing me to lose work and just double over in pain. Best of luck.
  • My history is similar to yours. I was diagnosed after already having 2 children. My PCOS diagnosis came at the same time they were trying to find the source of my excruciating pain. Turns out my pain was from a prolapsing uterus. I was 29 when they recommended a hysterectomy. I was devastated by both diagnosis because I had always planned on a big family. I went to a very kind specialist at Mayo Clinic for a second opinion on the PCOS & prolapse, he explained to me how lucky I was to have my boys and how much better I’d feel after the hysterectomy. Going through with a hysterectomy is a very hard decision. Even though my uterus was “trying to fall out”, my heart was still saying, “what if”. I can honestly say that as soon as the operation was over, I was very glad I had it. After healing, I was back to playing with my boys and being the mom they deserved instead of hunching over all the time or laying on the sofa.
  • Both Dr’s told me to keep my ovaries. I have wondered if that was the right advise.
  • Yes. Unless they are causing problems definitely yes. They produce hormones you need. Otherwise it’s lifelong hormone replacement therapy.
  • My hormones are c.r.a.z.y. I’ve had more than one Dr just sit there shaking their heads. Steady hormones through replacement sounds like a dream to me. Of course, I do realize I say that without actual experience.
  • I am also 26 diagnosed since I was 12 they also told me the best thing was to remove my ovaries I couldn’t do it I want kids. I have surgery about 1 every 9 months to remove the cyst.

Leave a Reply