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

[elephant]

This is my first post one the website and i have no idea where to start with my situation!

Im 25 and was diagnosed with PCOS at 16 and put on the Diane pill. When I was 22 I was diagnosed with Endo and a retroverted and retroflexed uterus after years of pain. My symptoms were painful sex, pain during bowel movements, general pain etc etc where do we stop! After a very painful surgery to fix my uterus and remove my endo things started to get slightly better then went downhill from there again when I was 24 I went back into hospital to remove my endo but there was none there. After a follow up with my gyno she explained that in my case the nerve endings from where my endo was removed previously are sending signals to my brain that the endo is still there so i still feel the pain. I have been on several treatments since. There has been Amytriptalline if thats how you spell it there were two different dosage levels at different times, I have been on tegratol which left me feeling nauseated and tired all the time. I just finished that and still has made no improvement. My gyno has suggested the next step to be Zoladex but im really scared about it. I have appt on the 11/2/08 and I have a lot of thinking to do before I do it!
Im finding it all too overwhelming, noone understands what its like to live with endo except you guys so I was so excited to stumble accross this forum!

I don't even want to think about my chances to have children with both my issues but im holding out hope.

[desist]

Re Dr Tronc recommendations - thankyou, I have just booked an appt with him and came online to check his rep. Glad to know that he is recommended, I thought he would be considering he's an ECCA surgeon - he'd bloody well want to be good for the price ;-)

[chris]

Hi girls
Just wondering how every one is....
Well I have good news - I am pregnant!
This is going to a very high risk pregnancy due to the Ashermans's Syndrome.
I am also in alot of pain.
Has anyone here had bad pain while pregnant. As I think the pain is from the endo but can't be sure.
My endo is in the pouch of douglas/front and back of uterus and on the bowel (well that is what I was told after a lap 10 yrs ago).

Take care
Chris

[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

[Cassius2]

Hi Ladies! ( I tried to post this earlier but for some reason it didnt work...so here it goes!)

Thank you so much for your feedback! It can be pretty lonely road having endo as not too many people are aware just how consuming it can be!

Nic: I have just moved to Melbourne so I will need to find a new gyno. My OB/GYN who delivered my DD in canberra was fantastic, but unfortunately he didnt know anyone to recommend down here, so the search begins!!
Fancy a Dr believing that endo is age discriminatory!! we get told so much BS as women that it's just not funny sometimes! (like the midwife who told me that have a pethidine injection would help me sleep through most of my labour!! fat chance of that happening!).
I'm not sure why my gyno at the time told me that it could increase my chances of infertility. I believed him and on my own decision decided not to go ahead, as he had also just told me that even without it (the Lap) i will most likely only be able to conceive with IVF. At the time, I was more worried about fertility issues than pain issues as i felt that I could control the pain on my own...lol!

Chris: I guess with the pain relief I was just self-medicating. I had somehow convinced myself that I was exaggerating the pain (even though at times I would have to pull the car over to the side of the road to sit it out!!), so I would take some anti-inflamm pain killers when it got too bad to deal with on my own.
It wasn't until I started passing out from the pain that DH decided he had seen enough and booked me in to see the Dr who specialised in homeopathy (we were in Italy at the time and had no access to conventional doctors). She prescribed me some treatments that didnt help with the pain, but with the endo itself. I was amazed at the result, by my 2nd AF I had my first 'normal' cycle in years! and yeah, as i mentioned in my last post I was pregnant 2 months later. Since then I have not taken any measures as AF only arrived 2 cycles ago and it was only this mid-cycle that I began experiencing really bad pain again. I took some panadol, but as you girls probably know it was like a drop in the ocean!! lol!
so back to square one I guess...and yeah, if you have any tips or recommendations on what can help, I am most willing to take it ALL on board!!

Thanks again,
Clare

[nic]

sorry for taking so long to reply girls.
Chris - I can't recall having nose bleeds, but I only did about 3 and a half to 4 months on the synarel. I did start it in the middle of winter, and did manage to get a cold as well. I went to the chemist and they checked out what I could have for my stuffy blocked nose and gave me yet something else to sniff lol.

Clare, have you noticed if there are any foods that make AF worse? I noticed that whenever I had a coffee or coke, and sometimes even chocolate, my AF was worse. It was only for the first couple of days though, about day 3 I could have a coffee again.
Hope you can find some answers about your pain returning.

Nic

[Cassius2]

Yeah sorry for the late replies...hectic times with work and bub! (no complaints tho!)

Hi Nic, yeah i find that if i have coffee, chocolate etc in the days leading up to and during AF the symptoms are MUCH worse. this is also the case during mid-cycle. that's interesting that you have the same thing. it must be a trigger of some sort. Maybe the caffeine...

[Laranna]

Nic/Cassius - I also found that eating anything sugary/fatty made my endo symptoms/cycles much much worse. I worked this out from when I had my lap I completely went off crap food and ate really blandly, simple veggies/wholegrains/meat etc and AF was great, then when I started adding sugary/fatty foods back into my diet, the endo pain started to slowly come back.

[Deevine]

Hi Ladies,

I definitely think diet has a lot to do with Endo. I find coffee and sugar are my biggest culprits, and tend to make the pain worse. If only I didn't crave both!!

A question for ladies that have spotting before AF. After you had a lap, did the spotting continue? I've found that the lap did nothing for that symptom, or really for any symptoms for that matter.

The acupuncture i'm having is helping I think, but its hard to say. I think i'm getting better, then the next month I get the mother of all AF's. I'm also taking herbal and nutritional supplements, which i've been on for almost 3 months now, and to be honest, I don't know if its all helping or not. I did have a really good month with no pain killers, where I didn't drink coffee pre-AF, I took a magnesium powder every day, and took a herbal anti-inflamatory at really high doses for 4 days before AF and 2 days into it. It's just getting really expensive with acupuncture and all of my supplements!

Laranna, did you take herbal and nutritional supplements after your lap? I know you said that you didn't take the hormonal medication recommended to you. Did you just change your lifestyle and diet? Your situation sounded very similar to mine and I need a little encouragement at the moment. I keep thinking that maybe I should have just taken the menopause injections.... its very disheartening when things keep getting worse since the lap.

D xoxo

[Laranna]

Angel - after I had my lap all my symptoms disappeared for a while. With the supplements, I saw a naturopath who put me on to Vitex Agnus Cactus (chasteberry I think?) which was a really foul tasting liquid. It is meant to balance everything out and regulate your cycles. Unfortunately, I had the biggest mood swings after 3-4 days of it so I stopped it. I just sticked with the healthy diet and exercise and found this to be enough.

I haven't tried acupuncture, only saw a basic naturopath. When I was looking at seeing a chiro for my preg back pain, I heard they may also assist with menstural issues, something about alignments and nerves around the pelvic area so that may be something else you could look into?

I hope things start to improve for you soon.
xx

[Deevine]

Thanks for your reply Laranna.

Its funny you mention about the Chiro. I actually went to an Osteopath about a year and a half ago, before my endo diagnosis, and she mentioned that my pelvis was out of whack/alignment. I know that menstrual pain can be worse if you have poor circulation to the pelvic region, its just trying to fix that which is the hard part! I should get back into pilates!

I've probably had the worst AF pain this week since my lap in october, but its also the month that I conceived last year, and coming up to a year since my misscarriage, so I think stress and emotions has a lot to do with my pain.

A naturopath told me that "wanting" a baby will make endo worse (and the stress and emotions that come with that)... not exactly easy to NOT want a baby when you've had a misscarriage and been told that it will most likely be hard to conceive again. All of a sudden everything becomes about just that, and its hard to maintain normality. I hate my uterus sometimes! lol.

Actually, I should change that to 'I love my uterus and it is healthy and pink and will carry a precious baby sometime soon'. Thats better.

D