(Closed) Endometriosis…. lovely.

posted 8 years ago in TTC
Post # 17
Member
380 posts
Helper bee

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@Nic01:  My sister has this, I believe it can be hereditary because when my Ma had her hystorectomy they found that she had the early stages of it too (at age 34 after 3 children)

My sister was very lucky that she had one child early on (at 21) but now she is 31 and has been TTC since age 23. She has been told that she has about a 5% chance of conceiving naturally and is currently in the process of going through IVF.

In saying all that (I don’t want to scare you because every case is VERY different) IF they catch it early enough it can be treatable. Sadly, my sister had the condition for approx 6/7 years before it was noted which is why she is having trouble TTC.

My sister has had the endometriosis burnt/scraped off (sorry, TMI!) a couple of times which improves the chances of conceiving, but it grows back quickly (for HER anyway).

Like I said, every case is very different. So don’t get disheartened by what I’ve said, it’s worse case scenario. The only thing that I will say is DON’T LET THE DOCTORS GIVE YOU THE RUN AROUND. If there’s even a slight chance that you do have it, make sure they catch it early 🙂

Post # 18
Member
32 posts
Newbee
  • Wedding: September 2013

For years and years I complained to doctors about horrible period pain. I was also fobbed off with “dysmenorrhea” and, even worse, being a hypochondriac. I was visiting a random doctor one day when I was 20 (for thrush of all things) when she said she wanted to send me to a specialist to check for endometriosis after taking my history.

 

After getting lost in the hospital system, I finally had my diagnostic laparoscopy at 22 and when I woke up was told that I was so damaged from my SEVERE endometriosis that the surgeon refused to touch anything. I was then referred to a specialist surgeon.

 

2 years later at 24 I had an 8 hour laparoscopic sugery where I lost my left ovary and fallopian tube, a fair amount of my right ovarian tissue, and over half a foot of my bowel where it had adhered to the back of my vagina over the years from the scar tissue.My fertility is shot to hell, not to mention a vagina covered in scar tissue (over 2 years later and sex still doesn’t feel right…)

 

That was 2 1/2 years ago and I am still angry at times. Angry for all the surgeries, angry for a frigging bowel resection so young, and angry at the pain and guilt I suffered for so many years. It does get easier, but I think I’ll always hurt a little inside. My partner and I found out not too long ago that having children naturally will never happen for us. We have since made the decision not to have children at all (after getting quite far through an IVF process), but I can imagine how devastating this would be for someone who really wants children. I don’t know where in Australia you are, but my specialist was Dr Wynn-Williams in the Mater Hospital Brisbane and he is AMAZING.

 

Post # 19
Member
10635 posts
Sugar Beekeeper
  • Wedding: January 2011

Sorry to hear this is what came out of your doctor’s appointment, especially when you’re planning on TTC soon!

It sounds like you now have a good doc though, who isn’t going to just brush you off and is willing to help you out before you reach the 1 year mark of TTC.  Hopefully you won’t need anything, but you know there’s the support if you do!

Post # 20
Member
767 posts
Busy bee
  • Wedding: November 2011

I had/have the exact same thing as you.  For years I knew I had horrible periods but (TMI ALERT!) then I started to notice actual chunks of tissue (between 1-4 inches long) coming out of me.  I brought one of the pieces of tissue to my doctor and she immediately referred me to an OB-GYN.  He thought I had endo as well and the laproscopy was performed a few months later.  The results were that he didn’t think I had endo and just “really bad” periods.

But knowing the results made me feel better.  I went into the surgery knowing that by the end of it I would have an answer.  I would really push for the laproscopy, it’s day surgery, I was home a few hours later and recovered in a few days.

I was told to take BCP consistantly, only breaking every 3 months for a period.  Now that I am TTC, I was experiencing the same horrible periods but have since started taking EstroSmart Plus suppliments and my periods are MUCH more manageable and less painful.  Good luck!

Post # 21
Member
502 posts
Busy bee
  • Wedding: October 2013

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@MrsC2013:  Gosh, I feel so sorry for your horrible experience

Post # 25
Member
1572 posts
Bumble bee
  • Wedding: May 2013

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@Nic01:  It was so weird, but when I woke up from my appendicitis surgery, the first thing I remember is a doctor saying “Wow… you must have really been in pain for a while!” and I was thinking “no shit”. I was diagnosed w/ endometriosis, ovarian cysts, and appendicitis. I felt so relieved that it wasn’t all in my head, and like you said, the bloat (etc) makes sense! I take provera (2 10mg tabs) every day and don’t get a period at all now. I don’t love the high level of hormones, but until I know what I’m doing kid wise, it’s not too bad. I definitely don’t miss my awful periods at all. I have had a few surgeries and still occasionally get pain, but it’s not too bad. Last spring, I kept getting ovarian cysts and that was awful. Let me know if you have any questions I can answer or if there’s anything I can do. I’m not an expert, but who knows, it might help!

Post # 26
Member
1430 posts
Bumble bee

@Nic01:  i have endo that has caused me to have 2 laps to remove cysts. This will be our 6 month TTC. Lots of women have no problem having kids and lots of women do have problems conceiving. At least your doctor is being proactive and will look into it more after a few months.

Post # 27
Member
1251 posts
Bumble bee
  • Wedding: March 2009

I have certain issues that have led me to believe I *may* have endometriosis. However, my old OBGYN wouldn’t test for it and assured me that heavy periods, low back pain, painful intercourse, constant cysts, and fatigue were TOTALLY NORMAL THINGS to have happen. Needless to say, I switched doctors and will be telling this OBGYN upfront that I have a few issues I’d like to talk about and see what could be the problem- I’m not going to self-diagnose, but I do want her to take me seriously.

 

Best of luck, and hopefully you don’t have anything! And if you do, at least you’ll know and can do something about it! 🙂

 

Post # 28
Member
238 posts
Helper bee

@Nic01:  i have endo….i got diagnosed when i was 19, which was 5 years ago.  i had the lap surgery done and they cauterized the bits that weren’t supposed to be there.  it’s been so much better since then.  i don’t take any bcp, but i do have a mirena.  i’m not trying to conceive at all, and won’t be for another 4-5 years so i have no words of wisdom for that.  i’m sorry that you’ve suffered that long though.  i’ve was blessed with a physician who would listen to me when i told him something is wrong

Post # 29
Member
339 posts
Helper bee
  • Wedding: July 2013

@Nic01:  I was officially diagnosed at 21 through a laparscopy. We are not TTC right now but  I can say i’ve had 2 MC, so you can get pregnant. Most can get pregnant, either natually or with some help unless your case is very severe but it doesnt seem like it, otherwise it would of caused many more problems early on. I take BCP to control the pain by skipping periods all together.

Post # 30
Member
1406 posts
Bumble bee
  • Wedding: November 2011

@Nic01:  I just had my first lap in January b/c I’ve been TTC for about 9 years now (with DH and my exH) and it was one of things my RE had me do before moving to IVF.

I too have always had painful periods and was told it was normal. Well, the surgery was to look for possible endo, remove a polyp and a fibriod. The doc said it would take 45 minutes….I was in surgery for almost 4 hours. 

The doc found severe endo, I had 3 large chocolate cysts on my right ovary, endo all throughout my reproductive organs and even on my bowels/intestines. He gave me 16 pictures at my first follow up of the mess that was inside of me. I watch scary movies, surgery shows, but those pics make me want to throw up every time I see them. 

He specifically told me I should have had the surgery 10 years ago….my right ovary had such bad endo and it will eventually come back that he said I will lose that ovary in the future. He also said I might need to see a specialist to cut me fully open to remove all the endo that has spread throughout my body. 

Great news right??? I’m not saying that you have it but please do NOT let this issue get put on the back burner, OK? And to any of the other bees out there w/the same symptoms….this is your reproductive health/wellness we are talking about. Don’t let a doc tell you that you are TOO young to have these issues…I was 27 at the time I was told this and I’m 36 now w/no children. 

Post # 31
Member
604 posts
Busy bee
  • Wedding: March 2014 - Narrawallee reserve/beach & Mollymook golf club

@Nic01:  I struggled with my endo for 11 years before anything was done about it. Every doctor Mum took me to just said I was a hypochondriac. I wound up in emergency with endone (synthetic morphine) being fed to me to relieve the pain. It was HORRIBLE! Finally my old paediatrician diagnosed me and booked me in for a laproscopy and I had it removed. My back hurt for the first couple of cycles after it but it was worth it to get rid of that crippling pain! 
Then just under 6 months ago I was diagnosed with PCOD to top it off! I did 2 rounds of lowest dose Clomid with no success (although I did ovulate as a result). 2 cycles AFTER the Clomid when I completely gave up…. Is when I got my BFP. Yesterday :D. I was told I’d struggle. All hope is not lost.

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