(Closed) Endometriosis Questions…

posted 3 years ago in TTC
Post # 2
Member
288 posts
Helper bee
  • Wedding: August 2017

1. You can only be diagnosed surgically –

Symptoms were God awful periods – though not heavy I would often black out and become incredible sick/ nauseas a day or two before. Intense pain during periods. I mean debilitating

2. Not necessarily. While some ablation treatments run the risk of infertility it isn’t super common

3. CFBC cant help you there, sorry!

4. Talk to your Dr. about treatments. I had minimally invasive surgery to both diagnos and treat my endo. They burned off the endo where they could (it does grow back over time). There is no cure for endo. I would consider treatment, then TTC as soon as possible after that. 

Post # 3
Member
502 posts
Busy bee
  • Wedding: October 2016

Following more for the answers.

I have been informally diagnosed, but only through telling the Dr of my symptoms – very heavy, long and erratic periods. Pain to where I could barely walk. I have been treated since I was 14 by taking BCP. I am going to stop the BCP in about 3-4 months in order to TTC and I am pretty scared for two things:

1. What will my periods be like without the BCP, will I be a 12 year old in a ball on the floor again. Honestly not too sure I can handle them and I am quite terrified!

2. No idea what it does to my fertility, but I am scheduling a pre-TTC gyno appt in a few weeks. 

I would love to see responses of people successful with conceiving, and to know that I will survive stopping the pills…

Post # 4
Member
630 posts
Busy bee

View original reply
endlessloop : 

1. I was diagnosed through laparoscopy a few years ago. My doctor said that is the only formal way to be diagnosed. I had HORRIBLE/ PAINFUL periods before my surgery. Same as a PP, vomiting, blacking out, etc. However, my doctor said some women can have endo without these symptoms. The level of pain varies person to person depending on the level of endo you have. 

2. No, it does not mean your dream is immediately gone. For me personally, my doctor said my endo had not affected my tubes at that point, so everything should be fully functional for me. However, some women have unexplained infertility, so no one ever knows until it happens. My doctor said he would only want me to TTC for 6 months before he would like me to come in for another laparoscopy procedure. I would like to add, I have very regular periods (though painful) which my doctor said will be helpful when we start TTC.

3. Sorry, me and DH have not started TTC yet. However, my friend has endo too, and she conceived her first child with zero issues, and then took years of TTC for baby #2. 

4. Once again, every women is different. The tissue can grow anywhere, so you wont know how it specifically will affect you until you have a procedure. For me, all of my endo is oddly placed above my uterus, so my doctor is very hopful on my TTC in the future. He did say endo can penetrate your tubes, and then he would be very concerned. 

(Also, I stopped taking BC years ago because I found it didnt affect my pain, but again, everyone is different. After my procedure, I had significantly less pain than before) 

All of that being said, you NEVER know what your future holds until it happens. My SIL is the perfect example of health and exercise and couldnt conceive naturally, all unexplained, there is literally nothing medically wrong with her. 

Post # 5
Member
2230 posts
Buzzing bee
  • Wedding: October 2019 - Chateau Lake Louise

View original reply
endlessloop :  So, I was diagnosed with Endometriosis as a teenager. I was having pain during intercourse and when they did an ultrasound, said it appeared I had endo. They didn’t opt to treat it, and I promptly forgot I had it. In my early 20s I had one MC and then conceived successfully shortly after. 

Fast forward to my mid 30’s and I started having excruciating pain and GI symptoms. At first, these would only happen once or twice a year, and no one could really explain what was going on. As time went on, the recurrence of these episodes got much more frequent. Then, it was happening every month along with my menstrual cycle. Eventually, I was in constant pain and was unremittingly sick. I did have an unplanned pregnancy in the midst of this, so conception was obviously still possible, despite the extremity of my condition.

I went to a new (highly specialized) GYN who diagnosed me with stage 4 endo (the most severe) and suggested I have a partial hysterectomy since I also had recurrent ovarian cysts as well. It didn’t initially help much. In my case, it turned out my endo had spread into my small bowel. The severity of my symptoms was because with each spike in estrogen, the cells in my small intestine were attempting to shed. Ultimately only a total hysterectomy has given me relief.

So, it’s totally possible to get pregnant with endo – even a very severe case. Preganacy even gives a respite, as the hormone cycle that triggers flares is suspended. Typically it is understood that while getting pregnant might be more challenging, staying pregnant isn’t. It could very well take a little longer to concieve, and most doctors will advise you to start sooner than later. Since there’s no cure for endo, it tends to get worse as you age because the lesions don’t really heal, and can begin to damage the lining of your uterus. 

I would talk to your doctor, but if they confirm they believe you have endo, I would try to educate your SO that it might take longer and become more difficult to conceive as time goes on, and it might be better to start sooner than later.

Good luck!

Post # 7
Member
778 posts
Busy bee
  • Wedding: February 2015

I was diagnosed at 27 with both endometriosis and PCOS so I can not tell you which symptomes was from the one or the other. But I had heavy periods lasting up to 10 days. A lot of abdominal pain almost every day, spotting mid cycle and freakishly long cycles, 90+ days sometimes. Painful intercourse and the last couple of weeks before my diagnosis was a bloodbath when having sex. My affected area is the Pouch of Douglas. I was put on BC pill without the sugar pills and it helped a little with the pain. Osteopathy helped way more for me.

I hope it’s not the end of your dream to become a mother. For me it wasn’t. I stopped taking the pills and my second cycle after I became pregnant with a gorgeous baby girl. She is 21 moths now, and I’m 29 weeks pregnant right now. It took a little longer this time, I think 4 or 5 cycles. I think it depends on the affected area and the treatment but I didn’t want to wait any longer. And mine was sort of under control, after 3 years the pain was increasing so I wanted to try the baby thing before something more invasive. I had my first at 31 and now my second will be at 33 years old. After my baby I didn’t have any pain, I was on the pill the first 9 months and was breastfeeding untill recently (21 months). I don’t know if that made a diffrence or not.

Ps. I don’t know if it’s because I’m used to the pain but I manage labour and delevery like a protongue-out

Post # 8
Member
3385 posts
Sugar bee
  • Wedding: July 2011

I have two friends who have endo.

one was diagnosed in our early 20s and had it removed. She also has PCOS. She didn’t meet her husband until late 20s and married last year. They started trying straight away and she was pregnant within 3 months. She had done lots of research on diet and the treatment of both endo and PCOS and had been working on that for about 6 months before.

the other was TTC for about 20 months. She had a laparoscopy and was pregnant 2 months later. 

Having ends is not the end of your fertility world, however, if you have it I strongly recommend you read The Period Repair Manual. There is lots of really good info on the condition. 

Post # 9
Member
1990 posts
Buzzing bee
  • Wedding: May 2016 - Sussex, UK

I’m going to a gynarcologist next week to discuss another laparoscopy. I was diagnosed 3 years ago although before that i’d had 3 transvaginal ultrasounds where they’d said it was 99% likely that I had endometriosis. I have endometrioma on my left ovary that according to my last ultrasound have grown in size so I think it’s time for surgery. 

We’ve been TTC for 9 cycles. My periods are exactly every 28 days, ovulate day 13/14. DH had a SA that came back fine. Hence I think the endometriosis is the issue.

Symptoms are low grade cramping from a few days after ovulation then VERY strong cramps day 1 to 3 of AF. Passing out occasionally.

In all honesty we wish we’d started TTC earlier but we wanted to marry first as traditional as that is. I’m 33 and IF it happens for us I’ll likely be 34/35 when I conceive. I am preparing myself for it not happening at all. It’s hard when all my friends are falling pregnant within a couple of months of trying. 

Good luck with your appt. If it is endometriosis then maybe you can revisit your TTC plan with your husband. 

Post # 10
Member
630 posts
Busy bee

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endlessloop :  The procedure for me was not difficult. I think it may sound more scary that is actually is. I did have an amazing doctor though! They went through my belly button, so I have ZERO visable scars. The only thing I had was some discomfort/pain in my upper abdmen after the procedure because they use certain gases to have better visability, and it takes a while for that to go down. That being said, I was supposed to rest for 3 days and had to go to a funeral the day after my procedure (which involved a lot of standing) and I was fine. 

Post # 11
Member
4073 posts
Honey bee

I was diagnosed with low level endometriosis during surgery. I had other issues with my tubes, that required the help of a RE, but the endometriosis was not to blame. I know three people with severe endometriosis, and all three are mothers who got pregnant without infertility treatments. One actually got pregnant while awaiting her medication order to start IVF. She did however have multiple surgeries to clear up the endometriosis and was told to stay on BCP after those surgeries until she was ready to TTC. This helped slow down the endo. Moral of the story, endo does NOT mean you can’t have children!

Post # 13
Member
2543 posts
Sugar bee
  • Wedding: June 2014

I was diagnosed at 22 by a surgeon. The endometriosis caused me to have appendicitis. 

For a few years I had been having severe cramps (like I could not walk/talk/function through them) during periods. Heavy bleeding and large clots.

I didn’t use birth control for several years and never got pregnant, so I thought I had fertility issues. When I told my doctor we weren’t trying but we weren’t preventing, and we would be happy to have a baby, she told me to try in a few days (based on my cycle). We followed her direction and what do you know? We got pregnant the first try! I was also charting and temping for about 2 months at that point so I am I quite sure of when it happened.

I was 27 when I had my baby. Honestly, a year wouldn’t have made a difference for me, but having a baby helped my endometriosis SO MUCH. I love having “normal” periods! My baby is now 1.5 years old and I’m still having good periods, although some of that is because I’m on Mirena too.

Post # 14
Member
715 posts
Busy bee

1. Very heavy bleeding and high level of pain are the main reasons you might suspect this. Painful sex is an indicator too. Your doctor will examine you if you specifically ask for it and it is easy to diagnose if they are looking for it, however be persistent because many doctors tend to assume it’s just “period pain”. It is * usually* diagnosed just based on symptoms and a pelvic exam, but laparoscopic surgery might be required. 

2. Certainly not!! Some women with very severe cases do suffer from infertility if the organs are greatly impacted, but generally there are many options to help you into motherhood. 

3. Talk with your doctor to come up with a TTC plan for you if it’s not happening naturally. There are TONNES of options available to you.

4. That really depends on your age, but if you’re young and otherwise healthy it should not have an impact. 

 

Good luck!!!

Post # 15
Member
908 posts
Busy bee
  • Wedding: January 2017

View original reply
endlessloop :  

    <li style=”box-sizing: border-box; margin: 0px; padding: 0px; max-height: 1000000px; border: 0px; list-style-position: inside; background-position: 0px 0px; background-repeat: initial initial;”>I have an unofficial diagnosis based on symptoms, an ultrasound, and a pelvic exam. My symptoms are very heavy and painful periods, pain with sex, and the ultrasound showed a very swollen Fallopian tube that my RE thought was probably due to endo. 
    <li style=”box-sizing: border-box; margin: 0px; padding: 0px; max-height: 1000000px; border: 0px; list-style-position: inside; background-position: 0px 0px; background-repeat: initial initial;”>Definitely not! Endo can cause infertility, but there are many ways to help you conceive, and many women who get pregnant without intervention as well. 
    <li style=”box-sizing: border-box; margin: 0px; padding: 0px; max-height: 1000000px; border: 0px; list-style-position: inside; background-position: 0px 0px; background-repeat: initial initial;”>My endo didn’t effect conception this time. Once I got my ovulation issues figured out (due to PCOS/other hormonal issues), we conceived the second month. My mom also has endo and it took her 2 years, but she also wasn’t charting or timing anything. I’d suggest starting to chart before TTC so you can see if everything else is working normally. And discuss with your OB/RE as they might want you to check in after 6 months of TTC instead of the normal year, since you have known issues.
    <li style=”box-sizing: border-box; margin: 0px; padding: 0px; max-height: 1000000px; border: 0px; list-style-position: inside; background-position: 0px 0px; background-repeat: initial initial;”>Endo usually does get worse over time, but I think it depends a lot on what stage you have and other factors. I would definitely talk it over with your doctor to see what they suggest. 

I will add that you should find a doctor who is up to date on current research on how endo effects pregnancy when you do decide to TTC. It’s commonly said that pregnancy cures endo or makes it dormant, but that’s not always the case (based on some recent studies). For me, I had continued pain through the first trimester, and am now suffering from irritable uterus and threatened preterm labor, which may be connected to endo as well. Definitely not something to be afraid of, but it’s good to have a doctor who will look out for these things during pregnancy. I was also told by my OB that it might effect delivery, so just things to be aware of. My mom had two normal pregnancies and births though, so it’s definitely not guaranteed to cause problems.  

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