(Closed) Endometriosis & Fertility?

posted 5 years ago in TTC
Post # 2
Member
1863 posts
Buzzing bee
  • Wedding: August 2012

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cece_get_married:  I had replied to this post on Saturday, but then my phone installed an update halfway thru my reply and I haven’t had a chance to retype it. 

I’m so sorry that you have to deal with endometriosis too.  I have it and it’s not a fun disease!  

If you had it removed 4 years ago, it could very well be that you need to have another lap done to remove it again.  I was on BCP and it aggravated mine to the point where I’ve had 3 laps in 3 years because of pain. Each time, the doctor has said that the endo is back to the same level it was when she first found it into 2012.  Have you asked your doctor about doing another lap?  It could be worth it, esp if you’ve been off contraception for over a year.  I notice a huge difference after each lap with the daily pain! 

I have both PCOS and endo and as a result, I lost an ovary and fallopian tube in 2013 (a chocolate cyst twisted the ovary and cut off the blood supply to the tube and ovary.  If they didn’t remove it when they did, I was at risk for major infections and shock, so she removed everything on that side to be safe) and my doctor did say that the combination would make fertility a problem for us, but she’s being proactive in helping us and is fairly certain we should be able to concieve naturally.  When she did the last lap in Oct, she checked my tube patency to make sure it was flowing, did a hysterscopy to check for any endo/polyps in the uterus and basically did everything she could to check my internal organs while she was in there anyway. Are you charting at all? That is really helpful for me to try and time everything right because my cycles are not the textbook 28 days. 

Post # 4
Member
978 posts
Busy bee
  • Wedding: September 2016 - Blue Hound Farm

I got diagnosed with endometriosis a year ago after having pain during my periods. I now take the bc pill continuously so that I only have 4 periods a year and it’s helped tremendously. I’ve never had surgery and haven’t tried getting pregnant (other than an accidental 11+ years ago), I don’t know if I even want children but I def don’t like the idea that I may and won’t be able to… 

Seems like my symptoms are different than other people’s tho, which makes me wonder if I should get a second opinion. My periods are so light, I only use a panty liner for the 3-4 days I have it, it’s been like that for a really long time tho, and the pain didn’t start till bout two years ago. 

Post # 5
Member
1915 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

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cece_get_married:  In short, yes it can effect your fertility and yes it can reoccur after surgery, sometimes agressively. There are knowledgeable doctors out there, you just need to search a little to find them. I would suggest that you find a doctor who specializes in Endometrosis.

I complained of severe pain for about a decade before I finally wasn’t able to walk due to the pain. My primary doctor finally sent me to see a OBGYN who diagnosed me with Stage 1/2 Endo during a lap where he removed ‘what he could’ and told me that the rest wasn’t operable (near my bowel) and wouldn’t be a problem since there was so little there. He was an idiot who had no surgical skill and didn’t want to send me to someone who did. He put me on continuous birth control to reduce it’s reoccurance. I was on it for a few months before my husband and I started TTC.

As soon as I came off of BC my pain began getting worse each month. I was pretty sure it was my Endo coming back. After a year of unsuccessful TTC I found myself a new doctor who specializes in Endo. He did a lap right away and I found out that in less than a year my Endo had grown to Stage 4, it was everywhere: ovaries, tubes, uterus, bowel, bladder, both ureters and both kidneys. It was so bad that he couldn’t remove it all during one surgery. I went of Zoladex for 7 months to shrink it while I healed from that lap and had another lap afterwards where he removed the rest.

I’m so glad that I found an Endo specialist. Most doctors don’t know Endo, you are correct, but those that do can be great. I could have lost both of my kidneys if I had assumed my first doctor was correct and not had another lap (both of my ureters, the tubes between kidney and bladder, were fully encased in Endo and could have been squeezed shut by the Endo eventually, killing my kidneys- this is super uncommon btw, I’m just super lucky lol). Unfortunately we’ve now found that we have male factor fertility issues as well, so our lack of success is likely from both of us. If you have any specific questions on Endo feel free to ask. I’ve done a lot of research in the 2 years since we began TTC:)

Some things I’ve learned since finding a specialist:

If you don’t remove ALL of the Endo, it can grow back. Cutting out the Endo (excision) is better than burning it out (ablation) becuase when you burn it out you leave little ‘roots’ of Endo that have the potential to regrow. this has not been scientifically proven but most Endo specilists agree. There is no scientific evidence that multiple laps helps increase fertiltiy, only the first one does, they don’t know why. Multiple laps should be for pain/health reasons only.

These are some of the most informative and valid links I’ve found on Endo and infertility.

http://www.sart.org/uploadedFiles/ASRM_Content/News_and_Publications/Practice_Guidelines/Educational_Bulletins/endometriosis_and_infertility%281%29.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941592/

http://centerforendo.com/endoq&a.htm

 

 

Post # 6
Member
105 posts
Blushing bee
  • Wedding: July 2015

Thank you for brining this up. I had a cyst removed a few months ago and they found endometriosis when they were removing the cyst. I have had same the questions and it’s nice to know there are others out there!

Post # 9
Member
81 posts
Worker bee
  • Wedding: May 2015

My mom has endo – totally undiagnosed until she was in her thirties when she started ttc because she had no pain and light periods. Anyway, she’s crazy fertile – has been pregnant about a dozen times but always miscarriages or etoptic unfortunately (I’m adopted). 

I think treatment options are soooo much better than they were for her so good luck!!!

Post # 10
Member
1915 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

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cece_get_married:  Many women with Endo do not have any issue conceiving, but many do. You won’t know which category you fall into until you try. I wouldn’t schedule a lap pre-TTC unless it is for pain. Surgery is still surgery and has its risks, albeit minor. If it were me I would actively TTC for 6 months (as opposed to the typical year) and if you’re unsuccessful at the 6 months mark, then consult an Endo specialist and see about a lap for you and a semen analysis for your DH. Charting is a great way to be sure you’re timing everything correctly while TTC as well. lots of women TTC the wrong days because they don’t know when their fertile time is, I would make sure to figure that out as well so you can be relatuvely confident that you’ve given it your all before surgery.

Post # 11
Member
1863 posts
Buzzing bee
  • Wedding: August 2012

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cece_get_married:  There are risks to the surgery (as Aqualuv said), but in your case, I would try to push for it. It sounds like it could improve your quality of life!  I’m sorry it’s so hard to get it done in your country!  I hope you can find a way to get some help an answers quickly!

Post # 12
Member
978 posts
Busy bee
  • Wedding: September 2016 - Blue Hound Farm

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cece_get_married:  I was considering having the procedure, but the dr. really scared me when he said that although the procedure would be done endoscopically, there was the chance that if they got in there and had complications, that they would have to open me up surgically, leading to a large scar. Since, according to him, there was really no benefit to having the procedure other than pain reduction (which the pill has really helped with) I decided not to do it. 

Post # 14
Member
662 posts
Busy bee
  • Wedding: May 2010

I have/had stage 4 endo, and had a laproscopy in January 2013 to remove it.  Since then I have been pregnant twice with successful pregnancies.  I only got my period a couple of times in between my pregnancies, so I’m hoping that the endo has not had a chance to grow back yet.  I haven’t gotten my period yet since giving birth the second time (my baby is three months old), but we will start ttc once I do because endo certainly impacts fertility, and pregnancy is a good “treatment” for it.  I would obviously prefer to not have more surgeries, so having children close together is the plan.

Post # 15
Member
1915 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

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cece_get_married:  Ah, I see. I understood your first post as that you were not trying at all and that the pain was okay since your first lap. Good luck.

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