Printable View
Hi
Was just looking for the "How are you traveling?" thread but it has gone so I will start a new one.
How are you all going with your endo? Or should I ask "Is it allowing you to have a life?"
I have just found out about a Womens Health Nurse at my local Community clinic. She is great!! With all the Gyn I have visited and talked to I would have to say she is good..
Has any one else got a nurse like this at their community centre?
Take care
chris
Dr's .....:angry:
Went to see the Gyn today and the one I seen dosen't really want to do a laperoscopy (I am too big..... ) I had a lap 12yrs ago and didn't have any probs so I am the same size still plus I have had 3 babies since then.
After talking to me he then goes and talks to the Dr in charge and they decide to go ahead with it as long as I try to drop some weight. When he starts to fill out the paperwork he adds that I am to have a D&C (we didn't mention a D&C the cause of my 2-3yr night mare), so I pull him up on it and he says it is done automaticaly during these procedures. Well I explained about my aversion to D&C's so he then goes on to tell me what if.....? What if....? So I agree to the D&C ONLY as long as it is needed.
I hate the thought of a D&C as they can cause Ashermans Syndrome - I have already got Ashermans syndrome (scareing of the uterus) to a small degree (I think it is around my cervix).
Anyway I will finaly get the Hysteroscopy (to formaly diagnose the Ashermans Syndrome) and a Laperoscopy to lazer some Endo away.
I hope all you endo girls are well...
Take care
Chris
I didnt know that about the link between D&C and A syndrome. When i had my diagnostic lap on Sept 07, i also had a hysteroscopy and D&C.
In a nut shell im 26, had a double bowel resection 18 motnhs ago where they removed 40cm of small bowel, some rectum to free my POD, appendix, R tube and endo from all over pelvis including a bladder segment.
I have been on Synarel since the op (June 07) as well as HRT. I go through the associated ups and downs of being on GnRh and recently went to see about some horrible lower left pains. After thinking it was bowel related (i was hospitalised for a bowel obstruction Nov 07 so am very weary of bowel pain) an ultrasound revealed an infection on my remaining tube that is supposedly caused my scar tissue.
Deal with pain on a daily basis, and hope to come off this GnRh sometime soon. The plan is to come off it when i plan to TTC but thats not likely to happen for a looong time. Wonder how the L tube will hold up til then! :wall:
Hi YDI
I am very surprised that the Dr didn't tell you about Ashermans Syndrome (AS). An infection in the uterus will cause AS or scareing. I am not sure where you live but if your near Sydney (or will travel there), there is one of the Worlds best Drs working a clinic at the Royal Womens Hospital at Randwick. He is the head of the clinic - Endo Gyn clinic and his name Prof Vancaillie, they also specialise in Endo pain and treatment.
You can go as a Public or Private patient. He and his fellows have helped alot of women I know and 2 of them had succesful pregnancys last year. From what I have been told the first treatment of the uterus needs to be done by a Dr who knows what they are doing.
To be treated it is only a day surgery (for most women) and hormone treatment for a week or two after, and then it will depend on how succesful it was if you need more treatments.
I was on Syranal back in 96 to try and treat my endo but I had to get off it as I started to get bad nose bleeds (it was a nasal spray). I was offered a GnRh injection last week by the Dr but I declined as I am going through enough at the moment with out another hormone causeing its own side effects.
If you want to know any more about AS feel free to PM me.
Take care
Chris
I had an ultrasound in 2007 after a small painful lump I had removed came back as an area of endo. The ultrasound found a endometrioma on my left ovary and some possible areas of endo.
I have been having a bad time of it lately, lots of pain and yukky stuff so am scheduled for gyno visit later this month. Will be asking to have a lap for investigation and possible removal of stuff. Is the D&C done as a normal part of a lap - if so why?
Hi Ausgirl
Its horrible to hear that your going through a rough time. Endo can be a nighmare.
I have been going through it for years.
My last lap was done automaticaly with a D&C and I never asked why. But after my m/c I had a D&C (not by choice as m/c was incompleat and there was a risk of infection), after the D&C I didn't have a period for 10 months (well an out going period) as it went internaly due to Asherman's Syndrome blocked my cervix.
When organising a Lap/ hysteroscopy the Dr (Registra) was filling out the forms and put in D&C and I freaked because of what happened last time. He explained himself and totaly confused me with his explanation that I agreed to it only if it is needed. So in short - if they see something with the hysteroscope they can do a D&C to investergate it.
The best advice I can give you would be go and talk to your Dr about the Lap and if he agrees to do the lap ask will he be doing a D&C at the same time as you have been told that is what happens, if he says yes he will be ask why??? After he has explained why ask will he use a hysteroscope to help perform the D&C (so he can see what he is doing during the D&C ).
Good luck.
Chris
I only just saw this thread now.
Chris, the original one was probably deleted in the clean up we had a while ago. When is your date for you Lap?
Anyway, my update is that the IUD I had put in with my lap back at the start of December now has to be surgically removed and a D&C will also be done. The mirena just wasn't agreeing with me and my Gyno had no problems taking it out after we'd agreed to see how things were after the 3 months mark and when he went to take it out, he couldn't find the strings, so he did a vaginal ultrasound and there it was, strings all the way into the uterus and the iud tight up against the wall of my uterus, with what looked like scar tissue around it. No wonder i'd been having so many troubles with immense pain and bleeding. Anyway, I am booked in for April 24. COuld have had it done on the 13th of march, but I only had 3 days warning (appt was on the 10th) to get DH organised with time off work and someone to look after the kids,so I decided to grin and bare it for another month.
Hi Trillian
OMG, I am sooooo glad I didn't get one also. I have instead decided to get my tubes tied.
I got a call on wed to see if I can have it done next wed 8th April (even though I was to loose some weight).
When I went to the app I didn't get to see the Gyn I seen her reg (not by choice) and he was very worried about doing the opp with me being "a large lady". He only wanted to do hystroscopy not lap. But I put my foot down as I need to have endo checked/lazered to help my pain.
Scaring of the uterus is called Asherman's Syndrome. Did the Gyn tell you any thing about it. PM me if you would like to know more (info/Dr's etc).
I am trying not to take any pan forte at the moment as I have been having Bowel problems. This is why I jumped at the chance to have opp done even though I have not lost much weight.
What pain releif are you useing? Did the Gyn give you a suppository pain relief? It works a treat
I have some panadeine forte left over from the lap, but I am preferring not to use anything JIC it punctures the uterus kwim? I need to know what the pain is like but its nothing I haven't dealt with before so I'm able to bare it. He said it was unlikely that it could happen, but it was also unlikely that what happened would happen in the first place, so I"m not taking any chances LOL. He didn't really talk about Asherman's at all - I think he is preferring to wait and see if it is scar tissue or not. All I can say is thank goodness that I'm not having anymore children or I would be beside myself about it. Thanks for the offer - if I do have any questions I will definately ask.
I would be really peeved about the weight - I'm a large person too and weight was never an issue for me with my lap (i'm nearly into triple figures). I tink so long as you are a normally healthy person with no BP issues or other health problems then weight shouldn' matter. And what is the good of only doing the hysteroscopy? That wont get rid of any endo in your abdomen and it sounds like you've probably got it on your bowel too. Fingers crossed that someone sees reason and you get the lap too :hug:
Hi Trillian
I think I confused you about the supository, it goes in ur B-hind (I know it isn't nice but it is too strong for the tummy plus it is absorbed faster and better "there"). There are some over the counter pain killers that can take the edge off the pain. As you need to be able to cope with the pain as you have little one's.
There is no way I would waste an opp for just a hysteroscopy, I need to have the endo checked as I have had 3 pregnancys and 10 months of no AF (but internal AF due to blocked cervix after a missed miscarriage). Mainly I need some answers so that I don't feel like, and get treated like a hypochondriac.
With my weight problem I don't have BP probs (unless pregnant), diabeties etc.
I just have problems that cause weight gain. A prof told me that it would be hard for me to loose weight so I just live healthy and try and do a bit of exercise when I am feeling well.
When I was told back in 07 that I had Asherman's and a Hysterectomy was on the cards. I went into a deep depression as I really wanted a baby. I was very lucky that I met a lady here on BellyBelly who is local and she helped me alot as she has Ashermans also, she told me about a Dr in Sydney and gave me alot of support and now I have my dream baby - Danielle .
I am always willing to help, if I can.
Take care
Chris
Hi girls
Well I had my Lap/Hysteroscopy. It was unsuccessfull!!
The Dr hit a vein and stopped the lap. She did take some pics (I seen them in my folder). I didn't get to talk to the doc after the opp but her Reg came out while I was wakeing up and told me. The Dr was rude to me in pre op while I was getting ready to go into thearter so I am going to try and see another Dr who has a better bed side manner.
To top things off I have a huge cut that is infected. She stitched eitherside of the wound and made it look like a grub. The wound healed but the stiches have gotten infected.
My Dr who did my last lap didn't make such a big cut and didn't sew me up like this. If she didn't do the stiches I wouldn't have the problems I have now.
I just can't win!!!
I hope everyone is well...
Chris
I would definitely be getting a new doc - for me feeling comfortable with the doc is the first important thing when deciding to do this op. I could've waited for the public system, but the fact that I wouldn't have a clue who would do the op was my decider for paying to go private (that and a HUGE waiting list).
My doc is just lovely and gentle and caring and takes time to answer your questions - even though he is very clearly super busy, I've never felt rushed out of his office.
My mum had a surgeon when she had her hystorectomy - many years ago so big op then, who she remembers being cranky they were running late before the op in the theatre, having a disagreement or whatever with someone in the theatre. mum ended up losing both ovaries - because they bled, wasn't supposed to happen like that but she feels the surgeons mood was part of the reason behind that happening.
Oh and I've booked my lap for the 25th June.
hey, i would love to find out how common it is for endo to run in familys. my mother had it and my yonger sister is struggling with it. I am so frighten to see a dr, i dont want to have it i saw first hand what has happened with my sister. Thank u for any help. Manda
Hi Girls
Trillian: How are you?? Have you had your op yet??
Ausgirl: Hope your Lap goes well in June.
Amanda lee: I have had period problems since I started to get them, and it has only gotten worse as I have aged. I know someone who has endo from a c-sec. It is along the scar of the c- sec on the outside of the uterus and is spreading from there.
I have an older great aunty who had the same problems when she was my age and she ended up getting a hysterectomy, but that was back in the 1940's. She was unable to have children due to all the probs she had. I personaly do believe endo can run in familys. I am going to keep a close eye on my girls when they are older that's for sure. I know that there is a study going on this but have not seen any results of it.
AFM: I still have problems with the opp site and am thinking about seeing my GP soon about it. Endo pain is really getting to me also.
Hope everyone is ok...
Take care
Chris
Hi Girls
Was wondering how you were???
My infection has cleared up and the scare has finaly healed. What was happening was - the knots in the disolverble stitches were breaking the new formed scar tissue from inside me :wtf:
I am still waiting to see another Dr as I will not go and see the Quack who did the op. I rang the hosp to see why I am still waiting for an appt time to see the other Dr (as a request was sent by GP weeks ago) and I was told that the Dr that read the fax put it in not important pile IYKWIM. I told the receptionist that I wanted to see the other Dr for my 6 week apt, so I hope I will get an apt soon. So I know what really went on in the Opp.
I hope all is well
Take care
Chris
Argh! I have been completely missing seeign this thread. Chris, I'm so sorry you had such an awful surgery, I think a new Dr is definitely called for. I am really glad to hear that the infection has cleared for you. I had that happen with my first lap, one of the incisions just wouldn't heal up and then it got a blistery pussy lump and the stitch hadn't dissolved like it was meant to, so it festered. Once it popped and I got the stitch out it was fine, but left a lot bigger scar. The ones from last year you can hardly see them now.
Things have been amazing since I had the mirena out - I feel like I am normal again. Plus I have had no pain during this cycle which sort of leaves me up in the air as to when af will arrive, but also great because it means the lap did the job and there is no endo causing trouble.
I am the only one in my family that has endo. My sister has always had normal cycles and My mum has always been quite irregular with hers, which is baffling as to how she always fell pg so easily, but she said she never got any pain, they were just irregular, so I'm thinking her ssue was more PCOS as she does have diabetes now and I remember she always had a few hairs on her chin when I was little LOL. But it is something I will definitely keep an eye on for my girls JIC.
Hi Trillian
Sorry I haven't replied earlyer but my comp died and then I has haveing probs with logging on.
I have finaly got an appt with a good Gyn that I trust. My Gp sent ref 8 weeks ago, last week I rang the hospital to see what was happening, I explained that I wanted to see this particular Dr for after surgery appt. I got my appt yesterday in mail and it was for 29 July , I thought it was too long to wait so I rang the clinic and explained that I knew this Gyn (she broke my waters for my first born and we were preg together last year - our bubs were born 1 week apart). Anyway I have now got an appt for next week Yay!!!
I know afew women who have endo, 2 of which got endo from their C sec's, 3 didn't know they had it (no pain at all - lucky them) until they got their tubes tied and then theres the women who have had the pain the heavy period (the works) like me. My 97yr old Great Aunty could have had endo, she had alot of what I have now. She ended up getting a hysterectomy. This is one of the reasons that endo has refered to as the "enigma". Every women has a different story to tell about her experience with Endometriosis.
I am soooo glad your feeling more "normal" and I hope you are endo free and stay endo free.
I am at the stage that I am in pain most of the time, if I am lucky I will have a couple of days pain free a month. The worst part is the anti Dep interact with pan forte and NSAID's so I have the affects to deal with or choose not to take pain killers. :wall:
I hope all the endo girls a well.
Take care
Chris
Hi girls!
ahh so the clean-up must explain why the old thread never showed up!
Chris: wow! i cannot believe that it has been 8 months since little D was born! where does the time go??!
man, i am sorry that things have been sooo awful. the treatment from that dr sounds just horrendous. i :pray: that you find someone with more compassion and talent for their job.
Sherie: woot woo on the positive result with the mirena being taken out. ahh so nice to be symptom free huh?!! but yeah, like you said, it does leave you wondering where your cycles are at for awhile.
i too have the same concerns for my DD. i look at her sometimes and just wish *wish* and hope that she wont get it. I am fairly certain that my endo started with the m/c that i had in 2002. everything went really pear-shaped from there at the very least.
AFM: well i have been having rather mild episodes. so i count myself lucky. i know that all is not great in endo-land for me as AF is still waaayyy too long and not a terribly positive (TMI Warning) colour. very much the old blood for the first 2-3 days and the last 1-2 days. also my O pain on the right ovary still gives me the willies. but seriously ATM i cannot complain. just happy to not be throwing up in agony everytime i guess.
Hi Clare
Glad to hear things are going well (compaired to how it was). Have you seen a Gyn about the length and colour??
AFM: I know I ovulated this week as I have been in serious pain. I can't wait till I see the GYN and see what she say's about everything.
Take care
Chris
Hi all
After my lap in June, I had level 4 endo, lots of stuff removed. Yesterday I had my post op visit, doc wants to put me on synarel for 6 months.
Those of you who've been on it, can you tell me your experiences. Is it as truely awful as I've read?
Hi Ausgirl
I was on Synarel many years ago. I hope it is more friendly as I had a nasal spray. I had hot flushes, mood swings and nose bleeds.
I didn't last on it for too long (3-4 months).
But that is how it was for me it could be OK for you, everyone has a different result with the drug.
I do know someone who it worked wonders for.
Take care
Chris
Hi girls
I was just wondering how everyone was going.
AFM I am haveing a real bad time with the pain. I know I am ovulating at the moment because I am in soooo much pain. I had to get DH to get me some Pan Forte so that I could get out of bed this morning. The pain is really getting to me. I had to have a rest today as I couldn't stand the pain. I was trying to zone out away from the pain to next find that I become so relaxed that I fell asleep.
I have just started facebook and most of my posts are about pain and things that I am going through. Some people must think I am just a moaning murtel complaining all the time.:redface:
Take care
Chris
Chris - sorry to hear about the pain. After some careful consideration and much investigation, I have decided not to do the synarel - at least for the moment as I am not having any symptoms and the side effects from the drug are terrible.
Yes it was the nasal spray that he prescribed.
hi girls!
Chris: oh man oh man. that does not sound good at all girl. i'm really sorry to hear it.
and you're so right, i think many ppl in my group of family and friends didnt quite realise the enormity of pain that endo can bring about. after i had DD mum asked how i coped in labour and i told her point blank that it was on par with an average O and AF pain. i *think* it was then that she really began to understand. i mean seriously you can't 'fake' passing out and throwing up. what course of action are you on ATM? do the GYNs have any clue as to what to do?
Ausgirl: i too had the opportunity to pass on the synarel. i guess i just counted myself lucky that at the time i wasnt too bad. and in all honesty it was the possible side-effects that totally turned me off. at least with the endo i knew what i was going to experience ITMS.
AFM: well for the moment i have no symptoms! i mean i get O pain, but i now consider it within the parameters of 'normal'. some cycles it is painful to sit down without care and attention but these are few and far between. that said i have been sticking to a styled diet of avoiding caffeine in the period between ovulating and AF. i found this to help me manage the pain. dont know why it works but it does for me so i cant complain lol! also AF appears to be 'normal' too. first time in a very long time. lasts for 4 days and is relatively pain free (took like ONE panadol last cycle!). so am happy with that. of course in the back of my mind comes a lurking fear that it will all happen again (especially as we are TTC #2 and fear of m/c and repercussions on the endo flair up again).
Hi girls
Claire: I am so jealous, hardly any pain, lucky you. I am in pain most of the time and it is very hard to deal with at times. I had an U/S yesterday and he could see the thinkening on the bowel and there seems to be something going on with my right overy (in the past 2 u/s this has been checked). This ovulation was on the right as I had a stabbing pain in that area yesterday morning.
Ausgirl: Good luck with the Synarel, I hope you don't get any of the side effects. It is getting warmer now so hot flushes in summer is not nice as that is when I had them. Did your Gyn tell you to take anything else while on the Synarel. I have heard that some women are told to take extra calcum or a womens vit sup to help with the side affects.
AFM: I am dealing with Severe PND (medication might have to be changed agian) and the pain.
Take care
Chris
I had my first lap surgery done in January 2008 (endo found on outside of uterine wall and bowel, only 75% removed due to the angle of instruments), followed by a six-month course of Zoladex. Hubby and I have been TTC ever since (11 months and counting...) and endo symptoms have returned, along with some new ones.
Time to go down the medical track again. :wall:
Hi,
Aurian: I have been told that some of the hormonal treatments can linger in your system for a few months after you have finished the treatment. Are you on any herbal or vitamins at the moment. Have you done any ovulation tests, the home kind??
Take care
Chris
Hi Girls
I have been to see they Gyn and I am not very happy.
I have been given the choice of Merina or keep doing what I am doing with pain killers.
So even though I don't want to I am going to try this merina. I'll give it 6 months. But if I start to balloon or if my pain gets worse I'm getting it out.
I am just out of options now. :wall: I am sick of being in pain all the time. I am lucky to have had 4 pain free days in the last 3 months. I can't take it any more!!!
Chris
Chris: :comfort: i am so sorry babe. this is just very very uncool. those 'answers' by your OB/GYN is just not good enough. do they not realise how frikkin impossible it is to live your life with constant debilitating pain? i vote no.
and in all honesty the PND is no doubt related to the intense battle you are waging each and every day just to find some pain-free moments. i know that my endo really played a role in the PND i experienced after DDs birth. i reckon alot of it has to do with the hormones that effect the endo also effect the PND...ITMS lol! gosh my brain is mush today!
Aurian: i am sorry that the symptoms seem to be flaring up again. do you chart your cycles at all? (like with FF)?
Hi Clare
Well I have got the Mirena in. I have no extra pain from getting it in but I have got a very light bleed. This month I will get no pain free days as I am already taking pan forte for pain.
I am feeling very defeated at the moment as I didn't want this. But I have it in hope I will eventually get less pain (well I hope!!).
My psyc thinks the same (that pain is a large part of the PND). He wants to change my anti depressants as when I am in alot of pain I still get depressed but when pain is low I am fine on the medication I am on.
How are you going at the moment??
Cheers
Chris
totally agree with ya chris. pain takes so much from us physically and emotionally that i think the inevitable is that we fall into depression. and when it is ongoing that can then manifest itself into clinical depressions like PND that require extra help and support. i guess the only advice i can offer (from my own experiences) is maybe instead of trying to change meds while your body is still undergoing MASSIVE changes with the mirena is to take out a few extra sessions with your counsellor through the really bad moments. i know that it can get exxy to do that, but i reckon it is less of an hormone assault at a vulnerable juncture ITMS. then, once you feel in a groove on the mirena then do a revaluation of the meds...just a thought of course!
Hi Clare,
Thank's so much for your support :hug: I hope you have "not" had the experience of what I am going through at the moment.
I have been on provera and depo before and hope that I don't have any side effects at all as it is supposed to be all kept in the Uterus. The hormones should not go into the blood stream at all like tablets and needles.
All the weight I have put on with depo/provera is very hard to loose. I know I am not the only woman who thinks this.
How are you doing these days?
How is your little lady???
Miss D turns 1 next week, they just grow up so fast... were has the time gone?
Take care
Chris
i know! i checked out your ticker the other day and thought i had read it incorrectly! i CANNOT seriously believe that it has been almost a year since she was born :o! insane in the membrane LOL!
fortunately, since 2006 i havent had to deal with any really icky treatments for the endo, i do thank my lucky stars and hope and :pray: that it stays that way. i know that the endo still causes some hormonal imbalances 'down there'. because i have fluctuating luteal phases and the O pain can still be horrendous.
as for the PND i had, well, that was horrific! i seriously wouldnt wish it on my worst enemy. it took me ages to realise that it wasnt just going to disappear so took me about 9 months before i told my MACH nurse...who went beserk and tried to have me committed :wall: (after this incident and another where she told a girl with PND that we are dangers to our babies, she lost her job, thank goodness!). but it was horrifying to finally confide in someone to have that shoved in your face. luckily, thanks to BB i found lisa fettling who specialises in PND and she saved my (and DHs!) bum. been PND free since December. so it can be done babe! just hang in there and give yourself time to grieve ITMS.
Hi Clare
I had PND after the birth of DS but it wasn't this bad. I was told at the local mental health clinic that I most probably had it (or a form of PND after the m/c). I am really lucky to have on of the best clinic nurse who has helped me so much. She knows alot of the workers in all the system and has refered me to get alot of help. I can't believe what your nurse tried to do, OMG how did she get her job in the first place. What kind of damage has she done to any other poor girl before getting the sack??
To top things off for me I have come down with a bug that has me coughing up my toes all day and my whole body aches. Because I have this I wasn't able to see my psych yesterday.
Danielle has some issuse that we are dealing with I feel like I am to blame, as she is behind the "normal" 1yr old" in a few things (mainly gross motor skills). We are now going down to Sydney Childrens Hospital.
I hope your little lady is well.
Take care
Chris