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

[jbub]

Hi Chris
I think I read some of your posts in the IVF section???
I also have great news - I will be 8 weeks pregnant this friday after my first IVF cycle.

I have been having terrible pain too. I have a 5cm endometrioma on my right ovary and it is mainly that that is causing the pain i think. I had a laparoscopy end of september to remove stage 4 endo and the endometrioma has grown back since. My endo was around the bowel, in the pouch of douglas, on the uterus,tubes and ovaries (they were stuck to the pelvic wall with adhesions. My pain now is mainly on the right side but sometimes up my bum too. The pain scares me a bit - when it is really bad I worry that something is going wrong with the pregnancy. I have had three scans so far to check on things. The doctor thinks the pain is just the endo. If I wasn't pregnant I would have to have another (my 3rd) laparoscopy but the pregnancy is the most important thing now so I just have to put up with the pain.I have seen the heartbeat too which was really amazing (this is my first pregnancy). I really hope that everything goes well for both of us.
How many weeks are you Chris?

Let me know how you are feeling

Jayne

[Deevine]

Hi Ladies,

Chris and Jayne - wow! Congratulations on your BFP Wishing you both H&H pregnancies. Hopefully you'll both be the lucky ones where the endo clears up somewhat due to the pregnancy.

I've posted in other threads, but haven't in this one, so thought i'd tell my story.

I was booked in for a Lap last July to look for suspected endo, when I was suprised to find myself pregnant in May. I was just about to cancel my Lap when I started spotting and had a miscariage. So i rescheduled my Lap for Oct, where it was confirmed I had severe endo, with my left ovary attached to my bowel with adhesions, and endosalpingiosis in my pouch of douglas. Had a bit of endo on my appendix to. It was 'all' removed/cut out (not that i believe that all of it has gone).

The specialist told me I needed Zoladex, and pretty much said I was lucky to fall pregnant in the first place (not the best thing to say to someone that had a miscariage). I did research and pretty much didn't want to go on Zoladex, didn't like the idea of 6 months of menopause. My moods and emotions are bad enought as it is!! hehe

Got a second opinion from Dr Michael Cooper in Sydney. He told me it wasn't as bad as first thought, and that I had two conditions, Endometriosis and Endosalpingiosis, which they don't know a lot about. He told me to go on the BCP. Did that for 2 months, but it made me feel pregnant, which was driving me insane and making me depressed. It also did nothing for my pain, and completely messed up my cycle.

I'm now having acupuncture done and taking chinese herbs. I'm giving this a go for about 6 months, and will hopefully see some results soon.

My endo pain, which was my main symptom, is actually worse since having my Lap in Oct. Has anyone else had this? The acupuncture is helping me with my digestive problems (i've had inflamatory bowel disease in the past), but i don't think i've been doing it for long enough for it to have a great impact on my endo pain yet.

DP and I have decided that we won't leave it more than a year from my op to TTC, so i'm looking at 4-6 months to get myself ready, or at least get my body ready so that its in the best possible condition to fall pregnant, and stay pregnant.

Well, thats my story, sorry its a little long! Wishing a very healthy 08 to all the endo ladies in here. Positive thinking ladies - end each night with visulisation of a big broom sweeping all of the endo away from the pelvic cavity. The mind is a powerful thing!

D

[chris]

Hi Jayne & D
I am 9 weeks pregnant, this is my 4th pregnancy. From my experience my endo did not do much clearing up while pregnant as it slowly started up agian after the 2 births.
The pain I am having is really doing in my head as is the constant thought that I am starting to miscarry.

For the past 6 years I have just been treating the pain (pain killers when needed) and not really worrying about the endo as I have been on that many hormones to try and get rid of it. At one stage I didn't know if I was Arther or Marther my cycle was really stuffed up and I had put on 45kg's so I decided enough was enough plus the weight would not budge .

Jayne take it easy and don't push your self. We can take panadol (not that it helps much). I am trying to learn how to meditate to try and get me pain free.

Keep in touch on how things are going I mainly stay in Miscarry and loss forum.
Take care
chris

[desist]

My endo pain, which was my main symptom, is actually worse since having my Lap in Oct. Has anyone else had this?

I had endo burnt off in november '06, and have deteriorated since. Pain during AF has increased in severity, although this 'bad' pain now lasts only 2 days instead of 3.

General abdo and back pain throughout my cycle is also more prominent since the lap, along with digestive problems similar to IBS.

I have an appt with an endo specialist on 4 March to (hopefully) find out what's going on

[elephant]

I had a Mirena inserted a couple of weeks ago to try to help eleviate my Endo pain so I'm hoping that works!

I finally after 4 months got my appt for the pain clinic but its not until June! I'm really frustrated that I can't get any earlier as I'm waiting on them for a treatment that gyns are not allowed to prescribe due to some crazy govt pharmaceutical nonsense. Its really frustrating when she knows it can help but by law they are unable to prescribe it. I don;t know if its a newer treatment or because its uncommon or what?
My endo is a bit different than normal being that I have problems with nerve pain where my endo was removed during a lap so the drugs are also for nerve pain than the endo specifically.

Has anyone else run into things like this?

[Cassius2]

Hi Ladies! I have been reading the info on this site on endo for awhile now (thank goodness this site exists!).

Sorry but this may be long as it is coming from years of pent up frustration...
My history with endo started soon after a m/c at 8 weeks in '03. At the time i didnt know what it was or what was happening so assumed that the pain and cycle irregularities were normal. in '04 things got really bad and during a routine papsmear with my GP she noticed that my cervix was badly 'damaged' (her words!), so i went back to my OB/GYN and after a quick look he diagnosed me with endo - and told me that i most likely would not be able to conceive naturally.
the only options i was given was a lap (which he told me could increase my risk of infertility - no thanks!) or to go through 6 months of menopause (as a 21 year old the thought freaked me out too much). so basically asking if there were any other options he said the best i could do was to check out the endo assoc. website and maybe follow their diet guidelines. i did this for 2 years. eventually though things got so bad that i couldnt walk when mid-cycle came around, i would bleed all through my cycle and during AF i would pass out and be sick. in oct '06 i decided enough was enough when, on holiday in italy i passed out in the street, totally unexpectedly, and had to be carried home by my DH! how embarrassing!
It freaked him out so much that he contacted a friend of his who is a specialist in homeopathy and is also a OB/GYN. after 3 hours of exhaustive questioning on my entire family medical history (she even asked if my Mum was sick during her pregnancy with me!) she diagnosed me with a 'weak' uterus and explained that the m/c created a build up that mixed my hormones. i am not sure if she was right, but, she prescribed me some pretty hardcore homeopathic treatment and within one month i had a normal cycle (yay!) and by the next month i was pregnant with our daughter (even bigger yay as we had been trying for almost 2 years!!).

the only problem is that since her birth things were travelling fine until AF arrived and now as i sit here my mid-cycle is kicking in and i can barely move! i thought that the pg might have fixed things up! or is this just an urban myth?! i am really frustrated ATM, so sorry for the vent! is there any permanent relief for endo sufferers?

thanks for your time,
Clare

[nic]

Welcome to BB Cassius
Have you sought a second opinion from someone else? It might be worth looking into, especially if you are having pain again.
I had painful periods through my teenage years, and even after seeing a gyno, he told me that even though I had symptoms and family history, it wasn't possible for me to have it at 16 as you don't get it till you are 25! Load of BS it all was.

After TTC #2 for over 5 years, we sought some answers last year, with a different gyno/fertility specialist. I was booked in for a lap to see what was going on and was finally diagnosed with endo, and a blocked tube, which they couldn't unblock. We were told that IVF was our only option, but before we could do that I had to spend 3 months on Synarel, shutting my cycles down.

I'm not sure why you were told having a lap would likely increase your chances of infertility? I have read numerous amounts of times how after having a lap the following 6 months or so are the best to fall pregnant. Something to do with tickling the hairs in the tubes and giving them a little wake up. (one of the theories i read)

After my DD was born and AF returned, they were regular, and painfree. I would probably have 1 or 2 cycles a year that hurt, but nothing like they did before DD. I would just take a couple of panadol, as opposed to being on prescription painkillers before my pregnancy with DD. It was only in the last 12-18 months that they slowly started playing up again.

I have to rush off now, will come back a little later to see what they other girls say and possibly PM you

Nic

[chris]

Hi Ladies
Just popping in to see how everyone is.
Nic when you were on the Synarel did you find you got nose bleeds after the 3 months(when you have a cold/hayfever and sneezing alot).
I went through so many treatments for my endo its not funny. I through the towel in when I was told the next option was a hormone that would lower my voice, give me hair on the face and chest etc.
I was not as lucky as you Nic as after both my births my AF came back and gradualy got worse.
These days I just control the pain with a routine (of pain killers) that I have worked out for myself.
As far as I know there is no permanent way to get rid of the pain. I have been told that even after having a hyserectomy and endo lazered that you can still have the pain. This is because all endo is not visable to the naked eye and can be missed by the Dr doing the lazering. So I guess the only thing that could help is Menopause .

Clare what pain killers are you taking?? What have you tried with no success ??? As everyone is different and there could be something out there that may help you.

Take care
Chris