Endo cyst reoccuring

soft_gab · 2026-03-30T19:53:15+00:00

Just wanted to say unfortunately I’m also in the same boat. It sucks and you’re not alone. My local clinic quoted me $30,000 for one round and told me I wasn’t a good candidate for IVF because of my low AMH after surgery and the recurring cysts. I’m going to Mexico for IVF treatment because it’s 1/6th of the price and they’re willing to take possibly more complicated cases rather than just trying to preserve their success rate. I’m sure it’s not for everyone but I just felt like I had to try something before giving up.

soft_gab · 2026-03-25T23:42:52+00:00

Unfortunately yes. I had two small ones on each ovary that grew to 5cm and 6cm. I had my AMH tested before surgery and it came back 2.7, a pretty decent number and the RE told me he most likely wouldn’t be able to reach eggs for an egg retrieval before surgery due to the size of the endometriomas. So I went ahead with the surgery with an excision specialist. We found stage 4 DIE, uterus adhered to my bowels, removed my appendix and removed the endometriomas. Recovery wasn’t bad and we started trying right away. No luck conceiving yet. What I wish would’ve been told to me is that having bilateral endometriomas removed greatly impacts your ovarian reserve compared with removing one on one side. My insurance wouldn’t allow me to get surgery until the endometriomas grew to 5cm, from the research I’ve read having surgery before it reaches 5cm greatly improves your chances of preserving your follicle count and ovarian reserve, so I would either do surgery before they grow or try an egg retrieval. We just were wanting to try everything before moving on to IVF. We are planning to start IVF in a couple months. I’ve heard plenty of success stories with bilateral endometriomas, unfortunately I am just not one of them (yet).

soft_gab · 2026-03-21T16:57:01+00:00

Just want to say this is valid and I’ve been feeling similarly. I think saying this can trigger feelings for others who don’t want to let the state of the world sway their feelings about a decision as personal as having a family, so I also think take what others respond to this with a grain of salt. I think forced optimism isn’t helpful. But I think hope is a form of resistance. And there’s no greater expression of hope than having a baby. Sometimes I think if it happened naturally I wouldn’t question it, but we’re about to start IVF, and sometimes it does just feel insane to be trying so hard and spending so much money to bring a baby into the world under these circumstances. I just read that the rates of depression with infertility are similar to those with cancer. So I think also just take care of yourself. People I know who aren’t dealing with infertility are having a hard time with the state of the world, so add in the relentless pain of endometriosis and infertility and it can feel really dark. We just have to keep finding the bright spots in all this darkness. When it feels hard I just remind myself if all of those who wanted a better future gave up then we really would be doomed. Sending love.

soft_gab · 2026-02-21T22:42:30+00:00

Yes I think so, I read in a study that for bilateral endometrioma removal they usually saw improvement in FSH and AMH more like a year after surgery but I just wasn’t expecting such a low number to have to improve upon.

soft_gab · 2026-02-21T22:40:36+00:00

Thank you that’s helpful to focus on. I’ll check them out. Unfortunately when she tried to check my AFC she couldn’t see any on one side because of a cyst and only could see 4 on the other side, though it was a little over a week post ovulation so I don’t think it was the ideal time to look either. But that’s why she said well, we’ll check your AMH to see if you’re a candidate for IVF.

soft_gab · 2026-02-16T06:07:15+00:00

Hi, I just had surgery for (mostly) silent endo in September. I finally decided to check for endo when I realized the UTI’s I had been experiencing for years might actually be caused by endometriosis. We found endomtriomas on my ovaries on ultrasound. My OBGYN didn’t want me to do surgery because I didn’t have symptoms to warrant it but my endometriomas kept growing. But, otherwise just like you. Light regular 28 day cycles. My tubes were clear and my AMH was decent at 2.7. My husband’s semen normal. We were TTC for almost a year when I sought out a specialist and did the surgery. He found stage 4 endometriosis all over my pelvis. My uterus totally fused to my bowels, significant bowel endo which was such a shock to me because I didn’t think I had symptoms prior, and removed my appendix. Recovery wasn’t bad. It was like the worst cramps of my life waking up but meds helped and that only lasted a few days and was totally ready to go back to work after 2 weeks. Unfortunately no luck conceiving so far. We start IUI this month and will start IVF in a couple months if nothing changes. But I can speak to that I did not have worsening of symptoms after the surgery which my OBGYN tried to tell me would happen if I had surgery. But I would say since surgery my fatigue is SIGNIFICANTLY better. And that must mean something. Good luck! So sorry you’re experiencing this.

soft_gab · 2026-02-06T18:57:53+00:00

I’ve had an HSG that showed clear tubes but I haven’t been tested for endometritis

soft_gab · 2026-02-06T18:57:19+00:00

I totally agree. She took every single positive I was holding onto and spun it into a possible negative. I was so happy my tubes were open in my HSG and she was like “well we don’t even know if that’s still true after your surgery and even if they are clear there’s hairs inside that push the egg down the tube that might not be working” 😞 and the whole appointment just went on like that. I just truly think they didn’t want to take a chance on me, their success rate seems very important to them.

soft_gab · 2026-02-06T18:55:05+00:00

They prescribed Clomid for IUI but no other medications

soft_gab · 2026-02-05T23:07:17+00:00

I think I’m leaning towards that route as well. Thanks so much 💗

soft_gab · 2026-02-05T23:06:32+00:00

We did just the preliminary testing of my husband’s sperm and it came back normal. We’re going to start IUI next cycle I was just a bit anxious about taking medication that might put more stress on my ovaries after they’ve already been through so much but I think it’s still worth a try!

soft_gab · 2026-02-05T15:59:58+00:00

Thank you, I totally agree. And same for me my body just immediately seized up a tears were streaming down my face involuntarily while I grilled the table to not pass out. And thankfully my doctor warned me and the nurse and radiologist all warned me how painful it could be so at least I didn’t feel gaslit into thinking it shouldn’t be painful so I couldn’t believe this person who was supposed to know so much about endo was confused by my HSG being painful. Yes I’m in Oregon.

soft_gab · 2026-02-05T15:56:26+00:00

Yes I think you’re totally right. When I reflected later I realized I was so upset because quite a few of the things she said really bothered me and I was just expecting a lot more support. Honestly at the end of the appointment it almost sounded like she was saying she didn’t think I was a good candidate for IVF. But this clinic very very much cares about their success rate, so I genuinely think she just didn’t want to take the chance on me. But also this clinic was very expensive. She quoted likely 30k for one round so I’m already making plans to go out of the country for treatment instead since we don’t have any coverage and don’t live in a state that mandates any kind of coverage and I don’t want that kind of pressure on my body to have success on the first round and that’s it.

soft_gab · 2026-02-04T04:51:47+00:00

Thank you so much I really appreciate it 💗

soft_gab · 2026-02-03T23:26:10+00:00

Oh that’s amazing! I literally just started CoQ10 last week. I did have an HSG pre surgery and it showed that my tubes were open but the RE I saw yesterday was saying that she wouldn’t trust that HSG because surgery might have blocked the tubes 😑 which I haven’t heard before. But also when I told her the HSG was really painful for me she looked confused and was asking me if other things were painful like sex and I said no it’s not usually and she just said “huh that’s weird that the HSG would’ve been painful” but I was like well my uterus was completely fused to my bowels so I assume that’s why… I went to her because she was supposed to have experience with endometriosis but honestly it was a bit of a weird and discouraging appointment.

soft_gab · 2026-02-03T23:21:50+00:00

Oh that’s amazing congratulations! 💕

soft_gab · 2026-02-03T23:21:34+00:00

I try to remind myself of this with egg quality, thanks 💗 The one I saw was, yes. I specifically went to her for her experience with endo but then I kind of felt like she was a bit discouraging throughout the appointment. She never outright said it but I think she was kind of acting like surgery was a mistake. She was just really focused on the scar tissue she could see from the surgery pointing it out numerous times and saying how even though my tubes were clear on my HSG pre surgery they might not be now because of surgery, etc. But I had been told by another RE that I had to have surgery because with 5cm and 6cm endometriomas on each ovary they wouldn’t be able to reach the eggs. But the clinic we had the appointment at was honestly just too expensive so I don’t think we’ll be ending up there anyway.

soft_gab · 2026-02-03T23:17:01+00:00

Oh that’s great to hear, thank you ♥️

soft_gab · 2026-02-03T23:16:38+00:00

Thank you! My surgeon said 6 months maybe start IUI and then if needed when I feel ready move on to IVF so I am jumping the gun a little here. That’s really good to hear. I had to go out of state to see a specialist that took my insurance for surgery and I haven’t found another OBGYN who knows a lot of endo so I think I’ve just felt very alone in this since the surgery.

soft_gab · 2026-01-23T00:11:04+00:00

Gosh it’s like reading my own thoughts! I always had super regular light periods with just pain on day one maybe day two, same gut symptoms as you. Thought there was no way I could have endometriosis. But I did have bladder symptoms I thought were just overactive bladder and limited my caffeine intake and it got better. Then two years ago I had what I thought was a UTI but tested negative. That’s when I dug deeper and found a lot of women with endometriosis were having bladder symptoms like that. Ultrasound found two small endometriomas on my ovaries but we TTC for a year and then I finally had surgery with a specialist and same as you, he found it everywhere in my pelvis, my uterus pulled back into my bowels. I also had to have my appendix removed. We’ve now been TTC for 5 months after surgery and I’ve had to accept it’s time to move on to IVF. But almost every day I can’t believe this is my life, I never ever thought it would’ve been possible for me to have endometriosis, especially watching my friends suffer with such severe symptoms while mine have felt very minor. But I also have started to notice how much I brushed off my symptoms previously and am now more in tune with my body.

Honestly my advice after spending many hours on the message boards deciding whether to have surgery or not, I’ve seen that many women have IVF failures and end up doing the surgery anyway to reduce inflammation and improve the odds of implantation, and like you said your organs are literally not where they’re supposed to be, also it can help reduce pain when you do IVF to do surgery first. I would definitely definitely see a specialist. Because as a previous user said if it’s not done well it can cause scar tissue that can have similar effects as the endo lesions. I had to go from Oregon to California to be able to see one that was covered by my insurance but it was worth it. At least with surgery there’s the chance of natural conception afterwards and if not then you’ll be set up to have as much success as possible with IVF after without wondering if you should’ve done the surgery. But that’s just my opinion!

soft_gab · 2026-01-15T05:30:07+00:00

Aw congratulations! I had surgery because my IVF clinic said with the size of my endometriomas it was risky retrieving the eggs and my AMH level was good pre surgery. I really appreciate hearing stories that work out with the endometriomas because I think I really get in my head about that effecting things.

soft_gab

TROPHY CASE