Endo?

[mlyn26]

Hi all

We have been TTC for 15 months (with just 5 cycles). I went to my doc y'day as have been getting pain in my right side, down low in my abdomen for over 1 month. It is worse during and after sex and in the mornings and night. In addition, i had the tiniest of spotting for 2 days too. The pain has not worsened when i go to number 1 (a little when i go to no 2) but did a urine sample anyway that was clear. My doctor didn't even examine me just said ' oh it is probably endometriosis, its nothing to worry about, most people can still have a normal life and have children.' I was like 'oh' He then said, your anaemia is worse, here's a prescription for iron tablets, ok.' And that was literally it.

I had a U/S in Nov which ruled out PCOS. I had never considered endo and surely he cannot diagnose with just that info. He knows my periods are irregular and i am overweight. In addition, he knows i have very heavy and painful periods when they do come but is this enough. In addition, i suffer with constant lower back pain and IBS. But put my back pain down to being overweight and an accident i had over 16 years ago when i was 11 and fell awkwardly. My IBS also worsens when i eat certain foods.

We are undergoing tests anyway, DH is awaiting sperm analysis results since his brother was born without vas deferens and have been told this could be hereditary. Have had bloods which are fine, have been ovulating as i temp and put irregularity of periods down to coming off pill (came off oct 08 and had just 4 periods in 1 year but my last cycle was just 39 days so getting shorter) and being overweight. We will be referred to Fertility specialist once we get sperm results.

So do any of you have endo, do i have anythinf resembling your symptoms. I heard diagnosis is through a larposcopy (sp?). Any advice would be appreciated.

 

[mlyn26]

Anyone?!

 

[muncho]

hi i had a lap in nov and was told i had endo (never had symptons bar one painful episode in aug) as a result i have a blocked tube and have just started ivf

onyl way to diagnose endo is via lap, they can also remove most of it as well but it will come back as long as you have periods
hope that helps

 

[jeniicie10]

i have endo (stage 3). it caused a cyst the size of a grapefruit to engulp my right ovary and close off my tube. endo causes me back pain and painful irregular periods. the only way you can be diagnosed is to have a lap. the only cure is a hysterectomy. it gets worse with every period you have. but there are other treatments that will delay the progression. i went through lupron depot, which is basically menopause for 6 months so my body could have time to fight it. it was really hard but four mounths later BFP! i hope i helped

 

[mlyn26]

thanks guys. This is so helpful. Can't believe my doc just left me with so many unanswered questions. I will either wait to discuss with FS or see another doc. Thanks again. X

 

[Dancingkaty1]

hi my fs said i didnt need a lap even though i have many symptoms of endo....she reckoned all the scans ive had done would show endo so i went to my gp and he agreed i should see a laparoscopy specialist....he referred me and after telling the specialist my symptoms the specialist said i def needed the lap, especially as we have been ttc for 18 mths now having it done on 3rd feb so only a few days to wait!! my symptoms are:

#low back pain alot of the time, especially aroiund ovulation and leading up to when af arrives, gradually gets worse.

#painful intercourse when deep up me

#painful periods, sometimes with clots

#pain when emptying my bowels

#used to spot blacky brown before af arrived for up to 4 days but since i have been on clomid seems to have got better

#painful sharp pains in low pelvic area, come on sudden, no pattern in cycle when it happens, i literally have to hold my breath its so bad

if i do have endo i will def be going to see my fs!!!!!!!!!!! i will not be impressed that she parmed me off with more clomid.

xx

 

[Dilek]

OMG hun that sounds like ENDO, Not to scare you but u have classic symptoms. The pain with number 2 is a clear sign, you might have it on your bladder.

Get reffered to gyno and insist they take u seriously.

 

[a_missy]

i suffer from very heavy and painful periods too and about a year ago (1yr into ttc) i started spotting each month. it starts usually about a week a few times its been 10 days before my period is due and i get horrible pelvic pain as well. i also suffer IBS but i've had that for years.

the thing that worries me a little now is that i found out just before Christmas that i'm anemic and when i asked the dr why she said "how are your periods?" and it suddenly made sense. they're so heavy!

now i'm worried that maybe the reason for the spotting and the heavy periods and a blocked tube is endo...

 

[reallyready]

Hi,
I had endo with symptoms including painful intercourse, loose stools with period, heavy heavy period which always resulted with me in the fetal position on the bed for the first day and using lots of ibuprofen. We were TTC since May 2008 and doctor blew me off about my endo speak, tried three rounds of clomid and then said that I should go straight to IVF without lap. After a big push from a BNB member (thank you, thank you!) I went to a specialist for endo and ended up having a lap end of November 2009 and now am in early pregnancy. Because of my age, I had some eggs retrieved too in prep in case the lap didn't spike my fertility.
Even if I did have the painful No. 2 loose stool problem, I did not have it on my bladder, but evidently it is really common to have it behind the rectum in the perinium (spelling?)
I encourage you to go speak with an endo specialist and see.
Oh and by the way my last two periods before conceiving were short, sweet and dreamy with very very little pain and no bathroom issues! I can't believe I put up with all of that for so many years! Mainly it is because I wasn't talking to other women about it so thought maybe it was somewhat normal. Yikes.
Good luck! You're on the right path of seeking info for yourself!

 

[Dilek]

Hi,
I had endo with symptoms including painful intercourse, loose stools with period, heavy heavy period which always resulted with me in the fetal position on the bed for the first day and using lots of ibuprofen. We were TTC since May 2008 and doctor blew me off about my endo speak, tried three rounds of clomid and then said that I should go straight to IVF without lap. After a big push from a BNB member (thank you, thank you!) I went to a specialist for endo and ended up having a lap end of November 2009 and now am in early pregnancy. Because of my age, I had some eggs retrieved too in prep in case the lap didn't spike my fertility.
Even if I did have the painful No. 2 loose stool problem, I did not have it on my bladder, but evidently it is really common to have it behind the rectum in the perinium (spelling?)
I encourage you to go speak with an endo specialist and see.
Oh and by the way my last two periods before conceiving were short, sweet and dreamy with very very little pain and no bathroom issues! I can't believe I put up with all of that for so many years! Mainly it is because I wasn't talking to other women about it so thought maybe it was somewhat normal. Yikes.
Good luck! You're on the right path of seeking info for yourself!

Hun, congrats on your pregnancy.

Can I ask, how did they retrieve the eggs? was it during the lap?

 

[a_missy]

Hi,
I had endo with symptoms including painful intercourse, loose stools with period, heavy heavy period which always resulted with me in the fetal position on the bed for the first day and using lots of ibuprofen. We were TTC since May 2008 and doctor blew me off about my endo speak, tried three rounds of clomid and then said that I should go straight to IVF without lap. After a big push from a BNB member (thank you, thank you!) I went to a specialist for endo and ended up having a lap end of November 2009 and now am in early pregnancy. Because of my age, I had some eggs retrieved too in prep in case the lap didn't spike my fertility.
Even if I did have the painful No. 2 loose stool problem, I did not have it on my bladder, but evidently it is really common to have it behind the rectum in the perinium (spelling?)
I encourage you to go speak with an endo specialist and see.
Oh and by the way my last two periods before conceiving were short, sweet and dreamy with very very little pain and no bathroom issues! I can't believe I put up with all of that for so many years! Mainly it is because I wasn't talking to other women about it so thought maybe it was somewhat normal. Yikes.
Good luck! You're on the right path of seeking info for yourself!

congratulations! and thanks for sharing your experiences too. i did voice concerns about endo but the dr i was seeing said it couldnt be because the pelvic pain was bad some months and not so bad others and he said it would be constant if it was endo.

i had a hycosy which showed a blocked tube and i asked again about the possibilty of endo and the fs said it might have been spasms which meant the dye didnt flow through and she wanted to try clomid before she considered anything more invasive... it gets so confusing and i think you get lost in all the information and the emotion involved. i dont know if i'm coming or going most of the time haha

 

[Rach27]

I would recommend getting a laparoscopy as this is the only way endo can be diagnosed. It cannot be seen on an u/s. If the surgeon has their wits about them, they will also treat you there and then by removing it.

I had painful periods, loose stools with a period and painful intercourse - although you can have endo and be asymptomatic. In my view, anyone who has been diagnosed with unexplained infertility should have endo investigated...if not just to rule it out.

I had surgery in November 2008 and after 4 years of ttc, got pregnant in the following June.

Good luck with whatever you decide to do

 

[reallyready]

Hun, congrats on your pregnancy.

Can I ask, how did they retrieve the eggs? was it during the lap?

Hi, sorry it took me a bit to see this. Thanks for the congrats! When I was at the fork in the road to do a lap or go straight to IVF, I decided to do the lap but because I am 39 I decided to first retrieve eggs and then if in 3 months after lap it didn't work out, I was going to start IVF - that would be this March. So to recap: Eggs retrieval in October, November Lap and January BFP before March IVF schedule. Many
xxx

 

[reallyready]

congratulations! and thanks for sharing your experiences too. i did voice concerns about endo but the dr i was seeing said it couldnt be because the pelvic pain was bad some months and not so bad others and he said it would be constant if it was endo.

i had a hycosy which showed a blocked tube and i asked again about the possibilty of endo and the fs said it might have been spasms which meant the dye didnt flow through and she wanted to try clomid before she considered anything more invasive... it gets so confusing and i think you get lost in all the information and the emotion involved. i dont know if i'm coming or going most of the time haha

Thanks for the happy dance! I would have painful periods some months more than others and painful intercourse sometimes more than others and now I think that has to do mostly with diet and stress and all the other life factors.

During these last months I borrowed a great book that had a section about endo that I found really helpful. https://www.amazon.com/Womens-Encyclopedia-Natural-Medicine-Hudson/dp/0879837888

Good luck with whatever you decide to do, but don't be afraid to take some time out to think/feel it all through. It can be so confusing, but you'll find your way! I remember feeling like I had too many voices in my head and I had to sit it out and wait for mine to speak up.
xx
rr

p.s. Rach27 was the BnB member who so encouraged me to look into a LAP. RACH!

 

[Dancingkaty1]

hi...well i had my lap & dye yesterday....still cant believe how well it went & that i have no endo!!!!!! all those symptoms & he said everything looks very healthy in there!!!

xx

hi my fs said i didnt need a lap even though i have many symptoms of endo....she reckoned all the scans ive had done would show endo so i went to my gp and he agreed i should see a laparoscopy specialist....he referred me and after telling the specialist my symptoms the specialist said i def needed the lap, especially as we have been ttc for 18 mths now having it done on 3rd feb so only a few days to wait!! my symptoms are:

#low back pain alot of the time, especially aroiund ovulation and leading up to when af arrives, gradually gets worse.

#painful intercourse when deep up me

#painful periods, sometimes with clots

#pain when emptying my bowels

#used to spot blacky brown before af arrived for up to 4 days but since i have been on clomid seems to have got better

#painful sharp pains in low pelvic area, come on sudden, no pattern in cycle when it happens, i literally have to hold my breath its so bad

if i do have endo i will def be going to see my fs!!!!!!!!!!! i will not be impressed that she parmed me off with more clomid.

xx

 

[brumbar]

I'm one of those who had no pain.... Well i did when i was younger, but the pain just stopped. I don't even need a paracetamol!
The only reason they found mine was the infertility investigation. All came back fine - regular periods, light bleeding, regular ovulation, tubes fine (HSG) then they found out we have male factor and just by chance they decided to do an ultrasound and found an endo cyst on the left ovary. Here's what happened after-
march - found cyst
June- noticed mild discomfort during sex only in certain positions. Went on endo diet. Dr. suggested the wait and see approach as i had no symptoms!!!
June, July, August spotting 8-10 dpo
September no spotting
October tiny bit of spotting. No spotting after that - fingers x-ed it stays that way (unless implantation!)
November Ultrasound - cyst hasn't grown. YAY!
Jan - lap + cysectomy + hysteroscopy, stage 3 endo. Tubes fine, All endo cleared.
I had only a small number, but very deep spots of endo implants, on bladder and pouch of douglas ( behind uterus) and of course my endometrioma. some of the implants were O.5 cm deep into my bladder.
Thinking back in time - i did have loose stools just b4 periods (not any more, judging by this last cycle) , but i was so happy to go to the loo that i didn't think it might be endo
So, as others have said - severity of symptoms and degree of endo are not directly related! My opinion is if you suspect endo - go check it out!

 

[Rach27]

p.s. Rach27 was the BnB member who so encouraged me to look into a LAP. RACH!

It's all my pleasure - seriously I was rediculously happy for you when I heard! I hope things are going well for you x

 

[ineedaseed]

thanks for this ladies, i think i may possibly have endo too. I have awful periods and was previously given meds for this but stopped when ttc. I also have heavy bleeding and large clots during af. I have also noticed my back pain has been getting worse and is pretty much now constant in my lower back. I am also experiencing sharp pains near my left ovary. I have just had a repeat blood test for fsh/lh done and get my results on monday, trans vag on the 8th march, hopefully it will give some answers.
I have been ttc for 3.5 years, have been lurking over in ttc since april 09 but am now on cycle 11 with no sign of a bfp, so will be heading to join you all if af arrives. xxx