Help from Ladies with Endo or PCOS Please x x x

[SBB]

Hi Ladies,

I usually hang out in TTC but looks like I may be coming over to LTTTC for a while and I just want some advice or some of your experiences with getting diagnosed with endo or PCOS...

I'm sorry this post is soooo long....

So I went to the docs yesterday - pretty useless. I think I have endo, I have been to a specialist a long while ago whilst on BCP, and at the time was told I could have a laparoscopy, I didn't go ahead because I didn't feel there was much benefit as I wasn't TTC.

Anyway, I have also had an ultrasound scan for my ovaries recently, no cysts, but possibly some follicles or polyps that shouldn't be there (no-one has explained properly)..

So, anyway, I gave my doc a list of my symptoms:

Pain before periods
Extremely painful 1st day of period (to the point I can't do anything at all)
Very heavy 1st day period
Upset tummy frequently
Ovary pains (sharp pains usually when I stand up - v painful I double over, lasts a few seconds)
General pains throughout month, inc shooting pains in vagina
Very irregular periods
Lower back pain (general aching)
Painful bowel movements sometimes, mainly during period
Tiredness
Headaches
Achy legs, top back and behind knees. Achy legs if standing for too long whilst on period.
Sometimes pain during sex
Feeling nauseous sometimes late afternoon
Frequent Urination
Occasional odd back pain like trapped nerve when bending
Mood Swings
Depressed

Last Cycles:
Most recent 44 days, Ovulated CD31
Before that 56 days, Ovulated CD 21
Before that 65 days, not sure when ovulated


So without even looking at the list, the doc said 'well from what I can see on the screen PCOS is more likely'. This is based just on the fact I have long irregular periods, and these follicle things. I am not overweight, and I don't have excess body hair. I know you don't have to have all the symptoms to have something, but it does seem I hardly have any of them!

So I made her look at the list, then she did say that a lot of the symptoms could be endo. She also said that there are 2 types of endo, 'chocolate' lumps that form on the ovaries - these affect TTC but would have shown up on my internal ultrasound. Then the other type which forms elsewhere and diagnosed by Lap, but these wouldn't affect TTC. I didn't think this was the case?

We've been TTC 6 months - She said I wouldn't get referred to a Specialist for 2 years because I am a healthy 20 something... Last doctor said 1 year WTF!?!?!? Did she not read the frigging list??!! She just said I probably have PCOS then said I'm perfectly healthy...

So finally she said she will take CD1 bloods to check for PCOS then probably put me on clomid to shorten cycles.

Sorry this post is going on so much, just need to give all the info!

So my questions are:

1. Is she right about the scan picking up the endo if it was on my ovaries?
2. Can the other endo (diagnosed by Lap) cause TTC problems?
3. Should I insist on getting a Lap? Will it help if I do have Endo?
4. Have you had a Lap before TTC for 12/24 months.
5. Will clomid help if PCOS is the cause of my long and irregular cycles?
6. Any other similar experiences, help or suggestions gratefully received!!


Thanks Ladies x x x x

 

[Alchemist]

Hi hun, its frustrating when you are dealing with docs sometimes.

1. Is she right about the scan picking up the endo if it was on my ovaries? no neccessarily, endo can only really be picked up properly during a lap - which you should insist on having given you are having so much pain......
2. Can the other endo (diagnosed by Lap) cause TTC problems? it could, it can release progastalins which could affect ovulation and conception, and implantation depending on where the adhesions are and how much there is.....
3. Should I insist on getting a Lap? Will it help if I do have Endo? yes def......it will help clear up the pain and also restore your pelvis to a fertile environment
4. Have you had a Lap before TTC for 12/24 months. I didnt have that problem here in South Africa. i am on a medical insurance.....
5. Will clomid help if PCOS is the cause of my long and irregular cycles? i am not sure about clomid. i believe injectables are better with PCOS but i could be wrong (dont have PCOS). but i am not so sure you have it either???? you could get it verified during a lap as well.
6. Any other similar experiences, help or suggestions gratefully received!!

 

[SBB]

Hi alchemist, thank you for your advice.

I think I am right in wanting a Lap done - I think it will at least give me some answers and if it is endo clear it up a bit so that I will hopefully be a bit more likely to conceive after.

I think I may get medical cover so that I can go privately - seems it might be the quickest way to resolve it..

Thank you again x x x x

 

[Jennifer8]

Hi SBB,

I have PCOS and have been put on Clomid and metformin as i wasn't ovulating, also I'm 24. I think you should get 2nd opinion.

x

 

[Dancingkaty1]

hi hope i can help by sharing my experience....

i was diagnosed with polycysts on my only ovary last june, i was referred to a fs, had all blood work done which showed i was ovulating fine, my fs did a hycosy then after the all clear put me on clomid, im currently on 4th cycle. i have been experiencing the following symptoms for almost a year:

painful intercourse
painful periods
clots in periods
pain when emptying bowels
sharp sudden pains in low pelvic area
very bad low back pain
spotting b4 af arrives

so when i spoke to my fs about this in dec she said that the scans i had done in june showed no endo so not to worry....i said oh right so scans def show endo??? she said not always but i think ur fine.....she gave me another prescription of clomid & i left the hospital crying feeling like she had parmed me off....

i made an appointment with my gp & when he said to me that the symptoms were signs of endometriosis & scans wouldnt show it up i got him to refer me to a private hosp....i had to pay the 1st consultation fee but was so relieved when the laparoscopy specialist agreed i did need the lap....he said seeing as i had been ttc for 18 mths it was a good idea to have the lap even if it turned out i didnt have endo so he booked me in.....luckily they treat nhs patients so didnt have to pay thank god!! had the lap and dye on 3rd feb.....

turned out everythings fine and he couldnt see any endo!! but im sooo glad i had it done as with all the symptoms i was getting i really thought that was the cause as to y we were not conceiving....we are hoping to have iui in the summer so we didnt wanna pay 4 it without knowing all tests ad been done b4hand.

i too have not really got any of the symptoms of polycysts....i have quite bad skin but my gp has said that i havent got acne.....i have a few hairs around my belly button & nipples but not loads....my periods have always been very regular....im not over weight


really hope u get some answers xxx

 

[january81]

hi i m new here...i m ttc for 2yrs...ultrasound showed pcos...my symtoms are all similar to Dancingkaty1...

painful intercourse
painful periods
clots in periods
pain when emptying bowels
sharp sudden pains in low pelvic area
very bad low back pain
spotting b4 af arrives

i m due for iui next month...i m fearing endo due to my symptoms...is iui successful for any of the endo patient?

 

[floofymad]

HI I have endo and have a lot of the symptoms on your list! Endo is only diagnosed through a lap.
I had my lap privately but the insurance sent me the bill. Think it was about £500. x

 

[Dilek]

With ur questions re endo its all a yes really. Basically a chocolate cyst is all the endo adhesions becoming a ball and causing a cysts and are attached to the ovary. this is easily picked up on scan. And yes if u just have endo adhesions it can affect ttc. If u understand the basics of endo, how its a period that some how gets trapped inside of u where ur blowels, ovaries and tubes are. U can then see how problamatic it can be. Like it can attach like ur tubes down. It can do all different things. However everyone is different, and many people fall pregnant without any issues and others are not so lucky.

i was told endo affects all parts of fertility to egg quality,to tubes and to implantation.

U can have endo and PCOs as well.

My endo was only diagnosed cause of the choc cysts and not because of my symptoms as i had none. But as i was more aware of my problem. I do recall these.

Painful cramping hours before period, which i have never had before
I use to get that sharp pain u mentioned where i had to bend over and gasp for air.
Painful bowel movements
And also the back pain but ive always had that.

 

[january81]

thanx alot for ur replies...

i told my symptoms and fear of endo to my doc and she did my internal ultrasound which was normal and showed no cysts....i read somewhere that endo can only be diagnosed through surgery? my doc started iui process and put me on injectibales fostimon 75ml on cd4,5,6,8 and 9 and booked me for ultrasound again on cd 10...i hope the process goes fine and i get bfp this month.

babydust to all...

 

[teapot]

thanx alot for ur replies...

i told my symptoms and fear of endo to my doc and she did my internal ultrasound which was normal and showed no cysts....i read somewhere that endo can only be diagnosed through surgery?

As mentioned by some of the others, an laparoscopy is the only way to definitely diagnose endo.
It certainly does affect ttc as mine has blocked & scarred my tubes. I think you need to go back to the doc & request a laparoscopy or at least an HSG to make sure your tubes are clear.

Otherwise, you will be flogging a monthly dead horse like I have been for 7 years.

...I thought at least an HSG (along with CD3/CD21 bloods & ultrasound) was a standard investigation before fertility treatment like IUI/IVF etc..

Wishing you luck on the road to bfp. x

 

[teapot]

...p s. I had 2 ultrasounds, neither of which showed up my endo or the fact that I had a polyp in my womb (the polyp was found during a hysteroscopy & removed during my lap).

 

[fifi-folle]

Right endo can ONLY be diagnosed through a laparoscopy. Chocolate cysts can be seen on ultrasound but there's no way to definitely know that they are chocolate cysts/endometrioma, they could also be haemhorragic cysts (cysts that bleed into themselves). Also sometimes u/s misses cysts, I've had this before, MRI picked up cyst that had been missed because they were behind the ovary.
I know others have answered your questions but I'll put my tuppenceworth in too...

1. Is she right about the scan picking up the endo if it was on my ovaries? no, I had many (like 20) ultrasounds before being dx with endo

2. Can the other endo (diagnosed by Lap) cause TTC problems? Endo can cause fertility problems depending on where it is, it can cause blockages to your fallopian tubes, it can contribute to m/cs, you can have failed ovulation. But equally some women get pregnant no problem, even with severe endo, it all depends on where it is.

3. Should I insist on getting a Lap? Will it help if I do have Endo? YES!!! I would be demanding a referral to a gynae for possible endo investigations, it doesn't need to be a F/S at this point, if you get a diagnosis of endo then you'll get fast tracked for fertility help.

4. Have you had a Lap before TTC for 12/24 months. I had mine before TTC and then started TTC after being told not to delay trying otherwise we might miss out.

5. Will clomid help if PCOS is the cause of my long and irregular cycles? Not sure about this one, don't know enough about PCOS to comment.


6. Any other similar experiences, help or suggestions gratefully received!!
Please push for a referral to a gynae, it's better to have it diagnosed and treated as soon as possible before it can do any damage (in my case I had problems for 8 years before I eventually went private to get answers.)

 

[january81]

i had my hsg this year my tubes are normal...u r right it is a standard investigation for fertility treatment..my treatment is going on at homerton..

 

[january81]

Dilek i read ur thread..i m so happy for u...did u get bfp still on endo or ur endo was removed?..jzk Allah

 

[fifi-folle]

D'oh I just realised SBB's questions were way back in February. January81 I would start my own thread rather than continuing on an old one.

 

[january81]

ok fifi-folle.

 

[SBB]

D'oh I just realised SBB's questions were way back in February. January81 I would start my own thread rather than continuing on an old one.

Thanks for answering my questions anyway

I was prescribed clomid in the end and am now pregnant

January I don't mind you taking over my thread but I agree it's probably best to start your own so people can respond to your questions rather than mine... Good luck

X x x

 

[january81]

congrats SBB i m so happy for u....sorry i m new here so made a mistake by posting my qs on ur thread.
i have few qs for u i hope u dont mind answering them...

did u go for lap before pregnancy?
u took clomid on what days and what mg?
ur hospital for fertility treatment?
so did u fine any reason for ur backpain, painful bowel movements and painful intercourse?

thanks hun

 

[SBB]

Hi January,

No worries about the thread it often happens when new people come on and search for something!

I never had a lap done, my doctor prescribed clomid to shorten my cycles and luckily it worked 1st time...
I took it days 5-9, 50mg.
I haven't found any reason for my symptoms, I still think I have endo, but may never know for sure. I had lots of pain and bleeding in early pregnancy which my midwife says could be down to endo... But who knows

X x x

 

[january81]

Hi SBB,
thanx for ur reply,i m sorry for ur pain

thats great it means i can also get bfp with all those painful symtoms....it gives me some hope.