(Closed) Endometriosis

posted 7 years ago in Babies
Post # 3
Member
3671 posts
Sugar bee
  • Wedding: March 2011

I don’t have endometriosis so my knowledge is very limited but one of my friends does.  She first found out when she was having other issues and as far as I know she’s had to have procedures done twice, possibly three times.  I can’t speak to the pain level because at the time I really knew her when she was having issues, she also had gallbladder problems that were causing most of the pain. 

It hasn’t really affected her that I know of although when she found out we were in high school (around 11th grade).  She was terrified that it would affect having a child later on.  However, now she has a beautiful baby girl.  She actually got pregnant while on the pill.  She gave birth early but I don’t think they connected that to her endometriosis. 

Post # 4
Member
19 posts
Newbee
  • Wedding: July 2011

Hi! I have it. I was diagnosed with it about 7 years ago when I had a laprascopy for an unrelated issue. I’ve been on BCP since then taking it consistently for 3 months, breaking for 7 days and then taking it again. I’m not sure what stage, I’ve actually just phoned my doctor to confirm that. I don’t have painful periods, no pain during BD. No one in my family has endo, or any fertility issues at all. I get to be the lucky one. 🙂 I get random shooting pains in my pelvis from time to time, but other than that pretty symptom free. We are on our second month TTC. I am giving it one year and then going to get some help! (I have been off BCP for 3 months now with no worsening symptoms) Sorry, I’m probably not that helpful just wanted you to know that if you DO get diagnosed, you are definately not alone out there. I know with all my pregnant friends and family, it can definately feel that way sometimes!

Post # 5
Member
1212 posts
Bumble bee
  • Wedding: June 2012

My mum had endometriosis. I know that she had really painful cramps. She says that they were so bad that she had to take whole days off work. 

When she was young, she was put on birth control to deal with the endometriosis. I think that helped a lot and apparently it was because of the BC that she got pregnant with my older brother! She had been told that she could never have kids, so she went off the pill and I guess there was a window between going off and the endometriosis coming back when she got pregnant. So that’s what I know about TTC with endometriosis. 

Post # 6
Member
467 posts
Helper bee
  • Wedding: October 2013

how long have you known?  I’ve known for about 4 or 5 months that I’ve had it.

how were you diagnosed? Ultrasounds. I then went that same day to the doctor and went over them. He explained to me that I had a cyst and endometriosis and drew me this diagram all about it. I’d heard about it before but hadn’t really known what it was.

what were/are your symptoms?  how severe are they? Severe pains in my right side (mostly) espeicially during my period and around ovulation. I also had issues with painful sex and I mean, to the point where I was just in tears because it hurt so bad. That’s what made me go to the doctor in the first place.

do you have a family history of endo? My mother found out she had it after giving birth to my youngest brother. I don’t know wether anyone else in my family has it, however.  We ended up getting it around the same age though. She was around 21/23 and I’m 20.

how does it affect your life and/or TTC? Apart from the side cramps and the sometimes painful sex, it doesn’t really affect my life. However Fiance and I did have issues with TTC. We eventually decided to take a break and so are waiting until after our wedding but I know it’s going to be hard. The thing he explained to me was that having the cysts and, well, the extra bits lasered off helps. He told me that the best time to TTC would be straight after that. He seemed to think it was the best option considering the cysts that endometriosis can cause can stop the release of eggs from your ovaries.

ETA: I was going to say something about the birth control too! *laughs* It’s not an option for me however, due to medical reasons which totally sucks. That’s why I wrote about the laser procedure.

Post # 7
Member
1944 posts
Buzzing bee
  • Wedding: June 2009

I hate endometriosis. I have stage 3 (there’s only 4) and I was diagnosed in Jan 2008 during a lap procedure to remove a cyst. Never had a symptom bc my Nuvaring eased the heavy flow and pain associated with it. I had it pretty severely behind my uterine wall. My sister and mother had it. My sisters was do extreme hers spread to her appendix and she had a complete hysterectomy at 27. I have to be on birth control to control it. While TTC for 18 mths it spread and was hard bc of the heavy painful periods. My OB and RE feel my inability to ovulate is due to it thus I’m infertile. If I can control it I may not need surgery in the near future but it does pur me in a high risk for cervical and ovarian cancer.

I honestly don’t know what else to say but that I hate it and hate what it’s done to my sister and my ability to have kids. I do want to end on a positive note and say if they caught it early and cam control it you should be fine. Some have difficulty conceiving quickly but I know plenty who have been able to despite having it.

Post # 8
Member
1370 posts
Bumble bee
  • Wedding: July 2011

I have Endo – I actually posted my FB status about how it’s kicking my ass today…

how long have you known? over 6 years, diagnosed via surgerya few days before my 18th birthday

how were you diagnosed? Laparoscopy – I’ve had 2

what were/are your symptoms?  how severe are they? almost constant stabbing pain near my right ovary, heavy periods with a lot of clots, painful abdominal cramps during period and lower back pain during period, bleeding after sex. I’ve cut a lot of stress out of my life since I’m not cheering or in school, so the pain is not as intense as it used to be.

do you have a family history of endo? yes – mom and maternal grandmother. My mom had a hysterectomy in her late 30s

how does it affect your life and/or TTC? I’ve missed days of work , cheerleading practice, and school in the past because I was in so much pain – while on my period and off – I also took a semester off in college when I had my 2nd surgery. I’m off BC now because Darling Husband and I are going to start TTC soon – but, my periods are so painful I might have to go back on soon and push TTC back.

If you have any questions, you can PM me for specific information

Post # 9
Member
66 posts
Worker bee
  • Wedding: April 2007

I have it. I was kind-of diagnosed when I was still a young teenager. They “suspected” it. In 2009, they confirmed it with laproscopy. During that they found the endo (I don’t remember what stage) as well as cysts and fibroids. My symptoms had always been severe cramps and extra long cycles. There is no family history of endo in my family, so its just me. I have just entered my 6th cycle of TTC and have an appt with the dr. on Thursday to follow up about the endo. I am mad I was not in a position to TTC back in 2009 – I almost feel like I “wasted” that time…I’m worried that it has had time to build back up. And every month I’m not on BC, I feel like its going to get harder and harder. However, my doctor seems confident that ultimately it will not be an issue so I am hopeful!

Post # 10
Member
66 posts
Worker bee
  • Wedding: April 2007

I have it. I was kind-of diagnosed when I was still a young teenager. They “suspected” it. In 2009, they confirmed it with laproscopy. During that they found the endo (I don’t remember what stage) as well as cysts and fibroids. My symptoms had always been severe cramps and extra long cycles. There is no family history of endo in my family, so its just me. I have just entered my 6th cycle of TTC and have an appt with the dr. on Thursday to follow up about the endo. I am mad I was not in a position to TTC back in 2009 – I almost feel like I “wasted” that time…I’m worried that it has had time to build back up. And every month I’m not on BC, I feel like its going to get harder and harder. However, my doctor seems confident that ultimately it will not be an issue so I am hopeful!

Post # 11
Member
3522 posts
Sugar bee
  • Wedding: December 2010

How long have you known?

 

I’d suspected it for a couple of years (due to pain) before I finally found a doctor willing to look into it. Before I found my current OB/GYN, I went to three other doctors and was told I was “too young” to have any substantial problems (even with the pelvic pain I was experiencing). Also, because I’ve been on birth control pills since I was 15, the other doctors believed that endometriosis “wouldn’t have a chance” to develop. They were dead wrong. 

 

 

How were you diagnosed?

 

During a pelvic exam, my current OB/GYN noticed some abnormal lumpiness around one of my fallopian tubes and wanted to check it out. I had a laparoscopic surgery in March, which was how they diagnosed it.

 

 

What were/are your symptoms? How severe are they?

 

When I was 18/19, I started having some mild pelvic pain similar to period cramps, except that they never went away. The pain intensified over time, and it bloomed into about a 12 on a 1-10 pain scale in the months before my surgery–it was so bad that all I could do was lie on the couch in a whimpering heap. I wasn’t informed after surgery that each withdrawal bleed can allow the tissue to re-grow, so I’m not 100% pain free. But most days, the pain doesn’t get past a 1-2 on the pain scale.

Do you have a family history?

None whatsoever. BUT, I’m missing half my medical history (I know nothing about my father), so it’s possible that there’s a history on his side.

 

 

How does it affect your life and/or TTC?

 

The pain was really bringing me down (obviously), but I’m feeling better these days. My doctor basically told me after surgery that I would need medications and/or fertility treatments to conceive, and Darling Husband and I decided that’s just not the road we want to go down. Somehow, I’m only at about stage 1 or 2, but I have scarring on my fallopian tubes, so…
I have hypothyroidism, too, which makes pregnancy risky for a potential fetus. There’s just too much overall that could go wrong for us to consider it to be worth the effort and cost. I’ve come to terms with the fact that a biological child is not in the cards for us; however, most people do not understand why we don’t even want to try, and the pressure from others makes things very hard for me sometimes. 

 

I’ve been taking monophasic birth control pills continuously (three months in a row), and it really helps to not have a period each month. I’m kind of irritated that I was never checked for problems like this when I started having super-heavy periods at 15 (the whole reason I went on birth control), but what’s done is done.

 

ETA: Whoa, sorry for the novel. Hope this helps!

Post # 12
Member
1993 posts
Buzzing bee
  • Wedding: May 2011

@MissGreen:  I’m sorry:(  I have read tons of stories of tons of ppl having babies with it. My parents’ neighbor, in my childhood home, had it, and she had 1 son and then identical twin sons.  I just wanted to say I’m pulling for you! I feel bad that I pm’d you about my dumb lining issue and I didn’t know you had endo.  Thank you for being sweet enough to reply:)

Post # 13
Member
653 posts
Busy bee
  • Wedding: October 2010

I’ve got endometriosis & hate every bit of it.

 

how long have you known? I was officially diagnosed 4 years ago but I’ve had trouble with my periods since I started (when I was 10) I was put on BC at age 14.

how were you diagnosed? Laparoscopy but unfortunately they weren’t able to burn any off, I have some bad scarring on my uterus & some lighter scarring on my bladder.

what were/are your symptoms?  how severe are they? I’ve always had wicked cramps, in middle school I would typically miss 1 day a month due to period cramps. From age 14-22 I switched BC pills every 6 months-2 years while trying to figure out the proper dose for me. At age 22 (after diagnosis) I was put on Lupron which stopped my periods for a year, following that I was put back on BC pills and after that stopped working I got an Implanon insert. In the past 6 months I’ve had AF every 2ish weeks and have had light to painful cramps almost every day. (Some days I’ve had to resort to prescription pain killers) Occasionally I have pain during sex but it’s rare.

do you have a family history of endo? Yes, but I’m the only one that has been officially diagnosed.

how does it affect your life and/or TTC? It’s actually the reason I’m TTCing. When the Implanon stopped working & I had 4 periods in a 6 weeks we decided to remove the insert a year early. We were concerned that if I stayed on BC for another year the endo would continue to grow and I would be infertile when the time to TTC came. When we first got married we thought we’d wait another 4ish years but with my constant pain we decided to scrap the plan and TTC ASAP. My gyno says we need to get pregnant in the first 6 months to try and prevent more pain. If we go for 6 months without getting pregnant we will need to see a RE. 

Both my mom & DH’s mom have endo & they both had 2 kids so I’m trying to keep my fingers crossed that I’ll be as lucky.

Post # 14
Member
1944 posts
Buzzing bee
  • Wedding: June 2009

@jholler25:

Do not feel dumb about your questions! It’s perfectly ok. I have other things going on too like one ovary and diminished ovarian reserve. I’m going for a second consult with a RE next summer before we dive head first into adoption to make sure we absolutely can’t have children so I’m hoping for some good news then! Thank you do much!

Post # 15
Member
1213 posts
Bumble bee
  • Wedding: December 2012

how long have you known?  Suspected for 4 years, confirmed 3 years ago. I’m 22 now.

how were you diagnosed? laparoscopy in October 2008. I was lucky in a way that I didn’t have much endo, but the little I had was located right near nerve endings which is why it was so painful. My doctor lasered off the endo and inserted my Mirena IUD.

what were/are your symptoms?  how severe are they? I had really bad pain especially around my periods, due to the position of my endo. Sometimes the pain was so bad I would be bedridden for a day or two. I once passed out while walking down stairs to get the phone, and my mum found me on the landing about an hour later.

do you have a family history of endo? Nope. But my little sister has had similar symptoms to me and we all think she probs has it too.

how does it affect your life and/or TTC? Now that I have my Mirena IUD I have no pain and no periods. It is fantasic. My IUD is due to be removed in October 2013, after that we plan to NTNTC for 6 months, and if nothing happens, we will start TTC.

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