endometriosis?

[melfy77]

hello to you!

first, I have to say my husband and I are not LTTCers (yet), but i think i will get more answers here than in the TTC section. So here,s my story, and question. My mother had endometriosis. According to the doc, it was supposed to be a mild case and have no impact on her fertility...well 6 years later, she got her first BFP...good thing it was only a mild case...I'm glad she's not my doc! But everytime she tells me about how she found out she was pregnant and how happy they were, I just feel happy and grateful. Well thing is, i worry I might have it to, since it's hereditary. I started my periods at 11, and they were annoying and quite painful the first day or so, but advils did the trick. When I turned 16-17, they started to get better, and now (25), I just don't take anything, or just acetaminophen every once in a while. My doc didn't find anaything wrong at my pelvic exam. And here's my question: I've heard that with time, as endo gets ''older'', the pain sometimes goes away, even though the endo can be extensive and cause scarring and adhesions? Has anyone experienced this? I'm supposed to see my doc again in a month and ask him to get a lap done.

Wow, sorry for the long story. Baby dust

 

[Sophe]

Hi

I think the level of pain and amount of endo do not directly relate to each other, I also think the only way to find out if you have it is to have a lap..

good luck x

 

[mrsd1606]

hi, i agree with sophe that there is no link between level of pain and amount of endo, iv just been diagnosed with endo following a lap however iv never had any symptoms whatsoever that would suggest i had it. Good luck and hope for ur bfp soon x

 

[cooch]

I also agree. An ultrasound and pelvic exam show nothing! I had 2 tiny bits of endo even though I had been trying to tell my GP I have it since my early twenties. I get really bad pain but there were 2 tiny bits, diagnosed and removed by lap.

After my op the surgeon said- no link between pain and amount of it. Some people don't have any pain!

 

[melfy77]

Thanks for all that good advice. so when I see my doc next month, I will not leave his office without my lap! I think there's nothing worse than the ''what if...'' and to all of you, LTTCers, I truly hope you'll get your BFP soon

 

[SWLondonMum]

Hi everyone, I usually post on 35+ TTC but have had a few niggling thoughts about endometriosis and there seem to be quite a few posts on here too (I'm also LTTTC #2 with DS1 aged 3)

Anyway in June I went to see my doctor as my periods had suddenly got REALLTY painful - they've always been a bit painful with cramping on the first day but usually about half a day and painkillers were enough. But I'd started getting stabbing pains, which I've had since then - like being stabbed with a red hot poker - pain killers don't help and they last for a few days. And I feel really tender too. I actually have to move about carefully and sit down carefully otherwise it really hurts.

The doctor I saw said it could be endometriosis but then said my periods were regular so it probably wasn't and gave me some strong painkillers. I knew nothing about endo so when I got home I looked it up and my symptoms matched (apart from irregular periods - my cycles have been 24-29 days since then but mostly 26-28 days) eg pain during sex - not really bad (as I would have stopped!) but just a slight uncomfortable feeling and I had been moving to get more comfortable if that makes sense - didn't even realise I had been doing it! And pain when I go to the toilet (sorry TMI ) a bit like being stabbed up the bum with a poker as well plus similar but less intense pains around ovulation (as I had started monitoring it around this time with OPKs).

Does this sound like endo symptoms?? It's interesting reading some other threads as people have posted that they've got it following a pregnancy as I had a m/c last Dec and only started getting these symptoms after that. And although a previous fertility test said my fertility was low 4yrs ago (before DS1) I actually conceived within 3 months NTNP for DS1 and the m/c but since then have had nothing with lots of BD around my fertile period.

I am now having the fertility tests repeated and obviously understand that my fertility is probably low (but don't yet know how low) but am wondering if it could be endo and this could be a factor in not conceiving as well. I guess I can answer my own question here but should I see the doctor again to mention the endo symptoms again (yes!)

Sorry for going on about myself (esp Melfy77 who started this!) and not being much help but there seem to be quite a few people here that have endo and know about the symptoms/effects...thanks in advance!

 

[cooch]

I don't get your doc saying its unlikely you have it as you have regular periods!!! I have always had regular periods. Here are some symptoms, however some women can have it with no symptoms whatsoever.

# Pain before and during periods
# Pain with intercourse
# General, chronic pelvic pain throughout the month
# Low back pain
# Heavy and/or irregular periods
# Painful bowel movements, especially during menstruation
# Painful urination during menstruation
# Fatigue
# Infertility
# Diarrhoea or constipation

 

[SWLondonMum]

I don't get your doc saying its unlikely you have it as you have regular periods!!! I have always had regular periods. Here are some symptoms, however some women can have it with no symptoms whatsoever.

# Pain before and during periods
# Pain with intercourse
# General, chronic pelvic pain throughout the month
# Low back pain
# Heavy and/or irregular periods
# Painful bowel movements, especially during menstruation
# Painful urination during menstruation
# Fatigue
# Infertility
# Diarrhoea or constipation

Thanks - as soon as I got out of the docs I saw a similar list online - I was trying to make sure I wasn;t just imagining symptoms esp the general ones but the pain during bowel movements (and occasional blood) is not a 'general' symptom and not something you can imagine! I don't know why she ruled it out from the periods - even if irregular periods are common with it, a quick look at some of the support websites shows that it's definitely not always the case. I will have to go back and mention the other symptoms!
Thanks again for your info

 

[melfy77]

SWLondonMum: Not a problem If this post can help someone else it's even better!

I did some research on endometriosis, and honnestly, this disease is a nasty one. First, like Cooch said, many women will have no symptom at all, some will have mild endo and tons of symptoms, while others, with a severe case of endo, will have no symptoms. But the infertility is such a pain, so hard to deal with. At least now we have PMA to help us if we need it!

 

[SWLondonMum]

SWLondonMum: Not a problem If this post can help someone else it's even better!

I did some research on endometriosis, and honnestly, this disease is a nasty one. First, like Cooch said, many women will have no symptom at all, some will have mild endo and tons of symptoms, while others, with a severe case of endo, will have no symptoms. But the infertility is such a pain, so hard to deal with. At least now we have PMA to help us if we need it!

Thanks! I have learnt a lot about infertility/secondary infertility and am now on a steep learning curve for endo - not sure I've got it yet but some of the symptoms are pretty clear...it was so sudden from this summer. I am lucky as I have a DS1 already but I'm also 39 and relatively low fertility and don't have time on my side for #2 so I'd better get on to the docs to find out about the endo....I guess it could make a real difference in how quickly I can conceive naturally
Thanks again and

 

[mamawannabee]

I don't post much here anymore, so I hope you don't mind me answering your question, but I struggled without a diagnosis for so long that I feel like I need to reach out to other women about it. As others have said, endo severity does not mean anything when compared to pain. It depends on where the adhesions are more than anything, and you could have it real bad with no pain, or a very mild case that is extremely painful. My doctor took three months of other testing and treatment before giving me the option of a lap even though I was sure it was endo due to my symptoms, my mother also had endo so I was familiar with it. It took her 10 years to conceive and I was afraid of the same. Just stick to it and make sure he does the lap, my doctor didn't believe that was what I had and would have kept putting it off had I not pushed him on the issue, if you keep at them about it, eventually they will give you what you need. I hope you don't have it! But for me, it was nice finally having an answer as to what was wrong, and a point of which to start treating the infertility from, so if you do have it, I hope they can begin the right treatment for you! And don't let them push you into treatment you don't want, they wanted me to go on meds to put me into menopause for 6 months to a year before ttc after the lap and I said no way, only do what you're comfortable with.

 

[phoenixrose]

Melfy77, have you done an HSG yet? I would say 1st steps 1st. I have actually had both myself. The HSG is much less invasive and will tell you important info. Definitely insist on the lap though if you still feel that you need it at that point.

 

[cooch]

Melfy77, have you done an HSG yet? I would say 1st steps 1st. I have actually had both myself. The HSG is much less invasive and will tell you important info. Definitely insist on the lap though if you still feel that you need it at that point.

HSG only show whether or not your tubes are open. You need a lap to diagnose endo

 

[sokillni]

I get really bad pain but there were 2 tiny bits, diagnosed and removed by lap.

 

[melfy77]

What's an HSG? I can always ask my doc when I see him, but I know i won't be satisfied until I get a lap or, better: my BFP

 

[phoenixrose]

Sorry, an HSG is a hysterosalpingogram. It's when they inject a dye that shows up on drags and then take xrays as it travels through your tubes. It can only tell u 2 things: mostly just if your tunes are open and two, if your adhesions are bad enough to cause visual distortion that shows up on xray. But if you don't mind a little surgery and you have your heart set on the LAP then the HSG doesn't really serve a purpose cause it will give you the same info. I had the HSG last summer and then was told to try for 6 more months, then I was given the option of the LAP and dye. For me they did find mild endo and released a slightly adhered tube (although it was open), but I'm been told that the endo is not what's affecting my fertility since everything is in it's proper place. If your going to get the LAP anyway, just keep insisting on it until the doctor gives in. If I've learned nothing else from this LTTTC it's that you have to be an advocate for your own health!

 

[mrs c f]

I suspect I have it. I went to the doctors two years ago and she did nothing. I went back a few months ago as I was still getting pelvic pain and back ache and we were struggling to conceive since our early miscarrage over a year ago. We have had to go through fertility testing and go to docs for the results on Thurs for both me and hubby. I am hoping that after those results they will send me for the HSG and a Lap.
I also used to get pain in my bum and sometimes pass blood from my bum (TMI) whilst I was on my period. It doesnt happen anymore, it just stopped!! I get pelvic pain and back ache, I am regular and dont get any pain during sex but I am so sure somethings not right!!!!

 

[cooch]

I suspect I have it. I went to the doctors two years ago and she did nothing. I went back a few months ago as I was still getting pelvic pain and back ache and we were struggling to conceive since our early miscarrage over a year ago. We have had to go through fertility testing and go to docs for the results on Thurs for both me and hubby. I am hoping that after those results they will send me for the HSG and a Lap.
I also used to get pain in my bum and sometimes pass blood from my bum (TMI) whilst I was on my period. It doesnt happen anymore, it just stopped!! I get pelvic pain and back ache, I am regular and dont get any pain during sex but I am so sure somethings not right!!!!

This sounds familiar, lol! I pestered docs yrs ago about endo and all they did was send me for a scan. It only shows on a scan if you have large cysts of endo. I only had two tiny bits and have suffered with horrible back pain and cramps most of my period life.x

 

[SWLondonMum]

I suspect I have it. I went to the doctors two years ago and she did nothing. I went back a few months ago as I was still getting pelvic pain and back ache and we were struggling to conceive since our early miscarrage over a year ago. We have had to go through fertility testing and go to docs for the results on Thurs for both me and hubby. I am hoping that after those results they will send me for the HSG and a Lap.
I also used to get pain in my bum and sometimes pass blood from my bum (TMI) whilst I was on my period. It doesnt happen anymore, it just stopped!! I get pelvic pain and back ache, I am regular and dont get any pain during sex but I am so sure somethings not right!!!!

Thanks - sounds just like me - hope it gets sorted soon!

 

[mrs c f]

I had the scan a couple of months ago but everything looked fine so no cysts. Good luck girls. xx