Endo updates..... how are you travelling?

Hi,
i'm new at this...but my story is similar to most of you.
I had painful periods from the time i started getting them when i was 13.
Went to several doctors and they said its just period pain.
finally got a referral to a gyno from a very nice GP who was also very old and about to retire....by this time i had ended up in hospital several times from passing out, low blood presure and on heavy medication for pain. I couldnt eat...my periods lasted months (about 4 months at a time) and i would bleed really heavy...couldnt even take a shower without a mess and was embarrased to go out.

was on the public hospital waiting list to see a gyno...but decided to go private after the hospital emergency room visits.

The gyno booked me in for a lap...confirmed i have endo and severe inflamation...after the lap i went on zolodex for 6months. Endo came back just as bad about 6 months after Zolodex.

Was diagnosed with PCOS after second laparoscopy...
dont know how but we fell pregnant with our son (whos 1 now).
I wanted a natural birth but it ended up being an emergency cesar... the scariest experience i've ever been through (2 weeks in latent labor and 16hours in active labour with coupling contractions).

after giving birth i didnt stop bleeding so they put me on hormone therapy...and during this time was diagnosed with Adenomyosis... which brings me to now...i'm 22 and have to plan when to have a second baby so i can have a hysterectomy asap.
so i'm guessing at the moment that by 24 i wont have a uterus anymore to worry about. Lucky that i fell in love young and got married...god really does work in mysterious ways.

Hi Mehza! and welcome!

i have to say that i agree on finding love young! I am 25 and was 23 when i fell pg with DD and i have to thank my lucky stars that DH and i found eachother so early! i was told back when they first diagnosed my endo that i would be more than likely infertile by 25 due to the scarring etc. freaked me out at the time (esp as falling pg was a hard won battle).

I am sorry that you had such a scary experience with your labour. that must have been tough. :hug:

when do you plan to start your TTC journey?

probably in Feburary next year...depending on finances.
Thats terrible...
i was deemed not able to have children as well...but it happened (accident to).
R u planning on trying?

not at this stage. we are going to TTC again when DD is closer to 3. that's if endo doesnt come back full swing. ATM we are playing it by ear...

february! that's pretty exciting. fingers and toes crossed for a good journey there!

Hey cassius 2,
yeah i'd like to wait but have to have a hysterectomy so trying to squeeze another baby out. just trying to...if it doesnt work out then at least we gave it a shot.
what are you taking for oyur pain?

Hi girls
I don't get on that much these days as Bub seems to know when I am at the comp.:rolleyes:

I was wondering if any of you girls had alot of pain after birth??
I have had pain since the birth, it is that bad that I am taking alot of pan forte/Ibruphen.
I thought the afterbirth pain should be over and done with by now.

Take care
Chris

Hi Chris , good to hear from you but not so good about the pain dear.

I didn't have too much pain after birth. It surprised me, I thought there would have been more. Is it endo type pain? Maybe a call or visit to the OB / midwife might be helpful, I had a friend that retained some placenta and bleeding heaps and in quite a bit of pain. It can't hurt to get things checked out.

Hope your feeling better soon.

Mehza: wow that must be a pretty major thing to get your head wrapped around. big :hug: you sound so strong! is there a definite time-line on when the hysterctomy needs to be done?

chris: yeah, i'm afraid that i didnt really have bad pain afterwards. like JG i was expecting it, but it didnt happen. it may be worth checking out, just to make sure that nothing has been left behind. big :hug: to you too!

AFM: well it appears that it is coming back...boo hoo. after my scare at uni, it all appeared to go back to normal and AF finished in good time. then a couple of days later i got the bloating feeling and small cramps and sure enough (sorry if TMI!) but older looking blood followed. has now been continuing like this for 3 days. pretty bummed, as i know the signs...ho hum. luckily i have one treatment round left over from my homeopath that was given to me just before i fell pg with DD...

as for pain treatment i have been trying with just nurofen, but when really bad i raid my stocks of panadol forte...my bad i know...what about you girls??

Hi girls

mezha : Why do you have to have a hysterectomy???

Cassius: For pain I use both pan forte and Ibrufen (nurophen). But if pain is really bad I will use Indicid (a suppository it is from the same family of drugs as Ibruphen but it is very strong hence the suppository (sp) way I have to take them But they do put me to sleep so I hve to have someone to look after kids).

AFM : I have an appt with GYN to see what I can do about everything, but that is in Dec (earlyest I could get). :crying: Between the pain and sleepless nights I feel like a zombie this afternoon :wall:

Take care
Chris

Hey Chris n cassius,
i have adenomyosis, endo and PCOS so my uterous is in pretty bad shape...am on hormone therapy at the moment which lowers bone density and a million other side effects so i cant stay on it too long. originally it was a hysterectomy at 30 but now its soon cause somedays i cant get out of bed on hormones and thats the only other solution.

Chris: Yes i had pain after birth as well the endo came straight back...i suggest for you to see your doctor soon. Especially if your in that much pain, even if it is your GP or a private gyno. doesnt sound too good.

Oh chris big hugs sweet! :hug:

hopefully the pain will settle to something more manageable between now and then...

that really sux about the waiting time. have you had a 6 week check-up? maybe a MACH nurse can get you into someone she knows???

Mehza: oh girl that sounds really painful! :hug:

Im with cassius Chris, Dec seems too far off in the event that it's post birth related and not endo related, IYKWIM ?

Cass - Bugger that your starting to see those familiar signs again. Big Hugs dear. I managed my pain with lots of heat, showers/hot packs etc , then naprosan (prescription) but I know they are not the best thing for your body but they were the only thing that allowed me to get out of bed and didn't cause too much drowsiness.

I just wanted to mention to mehza that depending on where your endo is a hysterectmy may not be the godsend you think. Its often the easy option for the dr but if your endo is outside that area, bowel etc you may still have trouble, sorry to be the bearer of bad news but I've done lots of research on this and was shocked to find that it is not a gaurantee at all - for me (I had not yet had a family) it was NOT a risk I was prepared to take. ie: have a hysterectomy, be on medication for the rest of my days or go into early menopause AND STILL PUT UP WITH ENDO PAIN...... There are other options dear.

For me - Im starting to get daily pain on my left side again. I had it while pregnant with H as well. I thought at the time that it was due to the recent surgery that did not have time to heal properly before I fell pg but no it seems to be just what my body does during pregnancy - great ! Fingers crossed that my uterus doesnt become irritable again and start contracting early. That was so tiring and worrisome. All a byproduct of too much abdo surgery over the years me thinks .

Mehza, I'm with Joel's Girl on this one. Plus you will also go into early menopause from the hysterectomy too - not sure at 24 if you'd want to take that path just yet unless it was the ONLY available option for you.

Clare and Cindy, sorry to hear of your recent troubles and Clare, I hope that it doesn't get any worse.

As for me, I will be having a laparoscopy for Christmas I think. I went to my GP yesterday because other things have been happening apart from the dodgy cycles (which last time was only 30days - I have NEVER had a cycle that short before), the clots, the pain. the tiredness and the moody-ness, I have also had a significant change to my bowel habits that have really worried me. So I am off to my Gyno on November 3 with a referral for a laparoscopy. Now I have private cover I'm hoping that I'll be done before Christmas instead of waiting 6mths like I did on the public waiting list.

Hi there girls,

Sherie: you should be able to get in pretty much straightaway. i was booked in 5 days after our first consult! (nice xmas present BTW! NOT!!). hope DH gets the hint and buys you something uber lovely in compensation!

oh yeah, the moodiness! i forgot about that one too! i was really all over the place this time around. oh joy, yet another hormone to be cross with...

JG: yeah i had awful pain on the right side from where the endo had really taken hold. awful as well when DD would give a good solid kick to boot too!

Sometimes even having a complete hysterectomy (both ovaries removed in addition to uterus) does not cure endometriosis, though it does for many women. Its not always a cure. It's a gamble.

I have been on GnRh and HRT for 16months since my double bowel resection last year where i was in hospital for 4 weeks and off work for 4 months and have been told a hysterectomy is in order by the time im 30.

Have you ladies tried diet and natural supplements I have found this to be a god send.

Great to hear from you YDI. I think of you often, hoping things improved for you. Glad to hear that the diet / supplement changes are still working for you.

Sherie - Hopefully the lap will give you some much needed relief. I usually found that a good clean out did the trick for awhile at least. You should get in quick I would think.

its been a long, hard road to recovery and im still no where near 100% but much better than where i was this time last year. still suffer from the consequences of bowel surgery and having so much bowel removed but im doing well :)

Hey Hey,

Yes i'm on a pretty strict diet lately and its going great- Lots of raw foods- according to the Endo Diet.
Also see an Acupuncture therapist, regular massage, Chinese herbs.
No caffeine or junk food in my diet and am pretty strict about it- it really helps with the hormone therapy.

Also have my own time inthe morning for Meditation and Yoga.

But on HRT i dont get periods at all so not too sure about how all that is going.
Bit scared about going off it for trying...very scared about periods.

Have been on all the options currently available to me for the Endo except Mirena...which i'll try after we have another baby if i can.

The problem is that the PCOS makes me bleed a lot, i'm talking a pack of pads a day for 4 months. SO to control the hormones i'm on HRT but when i first went on it i was stil bleeding through the pill (continuous no sugar pills) and the HRT. So the OBGYN had to put me on double the dose just to stop the bleeding.

its ridiculous i know. So now i have no bleeding but find it really difficult to function during the day (also have a 1 yr old and have trouble staying awake to look after him).
it gets to the point where my concentration is so bad that i cant drive etc. Bit like Tramal and digesic if anyone's ever been on that.

Hence the hysterectomy. i've been told that it will be a bacis hysterectomy of jut the womb...ovaries left in...but have an appointment in November to discuss it further.
The endo has spread to the uterus muscle to the point where the DR can show me on a internal ultrasound.

was very scary when i first saw large black spots...which is apparently the disease, it was everywhere as well.

but yes i will look into any other alternatives even if i have to travel to find it.
but for the time being focusing on a second child before it gets too late for me.


Hey YDI did you have bowel surgery from the ENDO?