Bad time with endo and Dr's...

[chris]

Hi Girls
A few of you know me and my story. I have a bad case of endo and at the moment I have a mirena in to try and help with bleeding and pain. It isn't working as well as what the Dr's hoped and they wanted me to take extra provera tablets. I told them I can't take the provera as I always gain weight on it, (I am a large lady who has put on 70kg or more on depo/provera). I am too big apparently for a histerectomy or a lap to try and treat the endo. So all I have is pain killers and Anti depresants to cope with all the pain and depression I have. I am starting to feel like endo is takeing over my life. I am in pain 99% of the time, I work my life around the pain and the affects of the pills I have to take.
I just don't know what to do anymore, I feel like I am fighting a battle that I know I will not win. Every day is a big effort just to do the maundane things in life. The more I push myself the more pain I end up in, it seems like an endless battle.

I feel like no one understands what I am going through. I am constantly in pain but I keep going, pushing myself untill I just can't do anything else but go to bed.
Is there anyone who is going through the same thing?
I feel so alone...
I don't know how I am going to keep battleing... it is so hard.

Thanks for listening...
Chris

[kt250]

Hi Chris,

Firstly I am so sorry you have gotten to feeling like you are at the moment. I started getting pain for years ( my long story is at the end page written in 2003?) I even had an appointment to see the gyno at the public hospital who told me basically, "cysts come and go. Go home and take some napragesics you will be fine." No she doesn't understand. I now know that chocolate cysts don't go away on there own, so basically am happy now she isn't treating me. I ended up going to a private gyno, who looked at the same report she did and put me in for a lap and diagnosed severe endo and told me if I had had my children at that time he would have done a hysterectomy then while I was under.

Are you seeing a GP DR or gyno. If you are seeing just the GP I would maybe ask him for a referral to a Gyno & if you are seeing a Gyno maybe seek another one out & get a second opinion. I have a very dear friend who had weight on and her gyno did a hysterectomy on her.

So please keep going until you come across a gyno that you are happy with.

I hope you are feeling a bit better today.

Katie

[chris]

Thanks Katie,
I was really starting to think that I was a rarity. That no-one understood what I am going through.
My Gyn that I am seeing is great but I see her at a public hospital so I do get to see some of the reg who are learning. It was a reg that I seen last time and she kept on going and seeing my gyn to get her thoughts.

I really need to loose some weight to get the opp's done. That is what I am trying to do at the moment, but it is painfully slow as I am in pain all the time.
I think when I do get the opp it will be a huge opp that includes alot of burning of endo and scare tissue away and fix some of the damage that has been done over the years.

As well as the endo I also have other health conditions that have to be considered as they will affect the recovery time after the opp.

In the last week I have seen 2 of my other specialists and they are helping me also. I just wish that they could all get in one room and talk things over between them on how they could all help me by helping each other. So they all understood what the others were thinkin of doing so that they all knew what was going on.

I am just finding life in general is hard at the moment with all the pain.
I have thought about going to see a more experienced Gyn, I just have to save some money to see him.

Thank you for posting
Take care
Chris

[Cassius2]

oh Chris! i am so sorry mate . this last year in particular has been really cruel to you and i am sorry xx

i'm afraid that i just cannot offer any practical advice. All i can offer is a sympathetic heart and solidarity for your daily battle; it is just unfair.

I understand that they would prefer you to lose some weight (ha! endo in itself stacks it on and in my experience is nigh on impossible to shift...), but surely there needs to be some consideration of the quality of life here? surely by now they have to start taking notice that this is of big concern. it is not fair that the endo is ruling your life like this, that you are now battling a depressive illness as a direct result. they need to start treating you like a serious case. bah, ok, i promise, my vent at the drs is over lol!

i know that this sounds really silly, considering the extreme situation you are in with the endo, but are you still keeping tabs on diet modification? even if it is just a placebo at least it is you getting some power back over your body IYKWIM. all these drs are telling you this and that and that is fine and good, but i think it is really important to remember that you are precious and deserve as such ITMS...

just my thoughts (ie ramblings LOL!). but i really mean it, your a good person and deserve way better than this xx

[anney]

Chris, I think you are absolutely correct in getting another opinion. Not sure what state you are in, but if I were you I would try to find one of the endo experts in your state and go to them. You are going to find it so hard to shift that weight that which is caused by the endo, I would hope someone would consider operating on you as soon as possible.

[chris]

Thanks,
Clare : Looking back it has been hard but I hve gotten through it, what I am worried about is that I am finding it hard to keep pushing myself to do things. I see a dietician who is starting to understand (or seems to understand) that the anti dep give me a decreased appetite and I find it hard to eat because I get nausious after I eat. I have started to use Iso whey to replace meals every now and then. For example , it was lunch time today and I hadn't had breaky yet so I had an Iso whey for brunch. From the anti dep I get an irritated stomach so I can't use NSAIDS anymore and pan forte are not enough any more. I use endone when I really need to but hate doing it at all. I really feel that the Mirena was a bad choice for me and I regret getting it. I am not sure what I am going to do next.

Anney: I can't really afford to go down to Sydney to see the big specialists, but I can see a Gyn near me who I have seen before. I am not sure if he is only on a private or if he does public patients also. But that is only a phone call I suppose.

ATM: I basicaly am still trying to loose weight and just take alot of pan forte all the time. We haven't much money to spare as we are doing alot of things with Miss D for her problems.

Thanks for your reply
Take care
Chris

[Cassius2]

it's just not fair that we are heading like the US in that we miss out on real specialist care because of costs. been there and know the crapness of that xx

sending loads of hugs to your bubba D too

the nausea from the drugs is full on. i reckon that it is the number one side-effect. friends have mentioned that they also get by on the 'up and gos'...but i guess that can get boring really quickly...

all i can recommend really is the basic stuff: try to cut out caffeine around O and AF time (for me, in the peak of endo, this basically meant for 3 out of 4 weeks). if anything, i felt that it slightly lessened the pain and longevity of AF...

i have also heard that acupuncture helps, but again, no doubt it costs a bomb...i mean seriously, it's the 21st century they should be realising that this stuff works by now and deserves to be on the register!! aarggghhh!!!

when do you see the new gyno?

[Footsteps]

chris, im so sorry your going through this huni.
iv got a problem from scarred tissue and endo and am on morphine for the pain and have been for the last 3 years.
i got the mirena took out after nearly a year to ttc. im not sure whether to carry on as iv had to reduce my pain relief and im not doing great.
depression caused by pain huni is hard to deal with (as is any depression of course) but as you know the reason but there isnt a cure, that is the hard part.
im in a extremely similar position my surgoen and gynae wont operate as it will only make my problem worse.
i was healthy up until i turned 18 when i ended up in hospital with bowel obstructions and from then im in constant pain and am in out of hospital with the pain.
it proved to me how your life can change in a instant and you do spend your life trying to deal with it....iv had to give up my job and nursing course because of it.
iv got real advice huni but if you need someone to talk to who knows what your going through im here whenever. stay strong. xxxxx

[chris]

Hi Clare and Rachel,
At the moment I am just trying to get through one day at a time. The depression from the pain I have is hard to handle. The more pain and bleeding I get the worse I feel. I thought I got the Mirena to help with the pain but all I have gotten is more bleeding and I really think more pain. The last couple of days I thought the bleeding had slowed to spotting but it is getting heavyer. The worst part is the endo on the bowel, I can't stop that from getting irritated. I suppose I am sick of all the "catch 22's" that seem to just cause so much greif for me also.

Clare: It seems Aussie is becoming more and more like America. But at least for now we do have a system that has public care. So I can be greatful for that. The hardest part is slowing the coffee down. (I have coffee running through my veins lol)

Rachel: We have spoken before in another forum. Huge hugs, Your so young! I am so sorry to hear of all your pain. When I was preg with Miss D the endo on my bowel was still very painful and I did use pan forte to help with the pain. So there is a chance that when you become pregnant the pain will not ease but become worse as you can't take so many pain killers. I am trying to stay strong, its just very hard sometimes. You also have to stay strong and I hope you get your dream baby, I will warn you it could be a very hard pregnancy but everything you go through makes that little bundle more precious.
Take care
Chris

[chris]

Hi girls,
This is a bit of a weird question but did anyone have more bleeding and pain when they had done more during the day. I ask this as yesterday I did some washing, took some pan forte and kept on doing things during the day. Picking up things after the kids, just normal kid of stuff. I ended up taking some endone in the afternoon and then more at about 10pm but the 10pm endone didn't help much at all and at 1am I was still in so much pain I was beside myself so I took another endone and got a heat pack and went back to bed. After the second endone I tried visualiseing/meditating again and I was able to go to sleep. It wasn't very restfull as I kept on waking upduring the night.

Today I found it hard to get out of bed, and the pain has settled but I have not done anything today but go to the Dr's and sit around. The activity of the afternoon of kids etc, then the pain started to get worse to the extent of me needing an endone tonight after I put the kids to bed. The more I do lately the more pain I am in afterwards be it going shopping, walking around, cleaning etc... anything more than sitting around being on the comp or lounge lizzard.

Has anyone else had this also???

Thanks for reading, any help would be great.
Take care
Chris

[Cassius2]

Hi Chris, yeah i have found that if i do more activities/excersise/lifting etc that i get pretty bad cramping. for me, with the endo at an all time low in terms of symptoms i experience it only more acutely around key cycle times (ie approaching O or AF). in the past i also found that those kinds of activities would also instigate break-through bleeding.

For me, it makes some sense if i take on board what my homeopath told me; she mentioned that due to some muscle weakness issues (i have a stigmatism and had a lazy eye as a child etc) that it also can correspond with the uterus. and she said that the cramping and endo was no doubt caused by a 'lazy' uterus (i prefer to call her a 'slightly confused uterus lol!). and in a way this explains to me why the pain and cramping and bleeding can occur when i do more excersise/activities...it kinda kickstarts all the muscles in the area and thus rubs and bumps and irritates the affected places....

i also notice that if i do excersise say 2-3 days after AF has left, that i bleed enough to need a panty liner...and scarily it is old blood. so obviously my body just isnt finishing AF properly...

HTH...i know that it might be slightly different, but i could see some similarities to what you were describing...

[chris]

Thanks Clare
Once again you have come to my rescue :^)
My GP said that it didn't make any sence (medicaly) but this has been happening for a long time. Now with the Mirena in, I seem to be making myself bleed more (and get more pain afterwards) with everything that I do.

I hope my Gyn understands when I tell her, sometimes when you talk to specialists they look at you as if your talking in code and they just nod when prompted.

I have been out today and have come home in pain. My shoulder has the refered pain and I have my pain pants on. All I can do is sit at the comp or lay down at the moment and since I am in charge of the 2 youngest at the moment I can't take any good pain killers.

I can't wait till I can get the Mirena out. I'm going to try and get in and see my Gyn ASAP.
Thanks for your help, hope you have a great Christmas.
Take care
Chris

[Jenn38]

Hi Chris,

Iwas just reading your posts and was wondering whether your gyno has offered you syneral.

It is a nasal spray that is used in IVF to put your body into a state of semi menopause. It would have the same effect as a hystorectomy with your hormones.

I wonder whether something like this would work??? Maybe worth a try??

cheers

[Cassius2]

Hi chris,

how have you been lately? have you had a chance to see anyone over this christmas period?

hope you're holding up ok xx

[TTCALoveChild]

Hi Girls
I feel like no one understands what I am going through. I am constantly in pain but I keep going, pushing myself untill I just can't do anything else but go to bed.
Is there anyone who is going through the same thing?
I feel so alone...
I don't know how I am going to keep battleing... it is so hard.
Thanks for listening...
Chris

Oh sweetie im so sorry your going through this.. Im 30 year old and i also have Endo i have had 2 laps first one he scraped alot off and the 2nd one was alittle with 5 cyst on me..
I use to weigh 130 now im up to 176 lbs.. which is depressing to me since i have always
been a small girl...
I always could tell when endo is coming or growing cause i would be in sooo much pain..

I was given 800 mg motrin to take 3x a day or as needed and i always took hot hot baths to help the pain.. and at nite i would take 2 Tylenol 2 motion to help me sleep at nite so i wouldnt be up all nite with the pain... and i always had something close to my stomach ,like a pillow to secure my spot in the bed...

I know my endo problem is alot different from yous but i do hope you can get some thing out of what i have done..to make you comfortable..
again sweetie im soo sorry!!!

[chris]

Hi girls
I haven't been really well at all. Sorry I haven't been back since before christmas. These days I am on Facebook all the time
I still have the Mirena in. I have asked both my GP and my GYN to take it out but they have said "No!"
I am still bleeding and in pain all of the time. I think the reason the Dr's will not take it out is that it's my only option. Meaning that its the last resort for me. It will stop me from falling pregnant (as if I can do that with all the bleeding and pain I am in all the time). I have to have a US to check if everything is OK.
I have been on Synarel before for Endo. It hasn't been offered to me. I have been on alot of hormones for the treatment of Endo.

My weight is a big problem as the fat tissue produces its own Estogen (sp?? sorry it is3:30am and Im still awake and in pain). I am hyperestrigen and this has its own problems. It makes the endo grow more and causes more pain.
I have gained sooooo much weight from all the hormones I have been on. Progesterone hormone is the worst for me as I really pile on the weight with it. I find it hard to loose weight that I gained while on hormones, yet can loose any I have gained from eating too much and not exercising. Not that I can exersise too much these days because of all the pain I am in.

In short I am only just hanging in there, I do everything in the book for the pain from hot baths, heat packs, visualisation, and lots of pills.
Thank you sooo so much for replying. I need to visit here more often.
Take care, hugs
Chris

[Cassius2]

Hi chris,

sorry to hear that things have been downright rotten for you. totally sucks (understatement i know ).

Listen, i have just come across this book called 'women's bodies, women's wisdom' by a woman called christine northrup. there is a whole section on endometriosis and her approach to the condition is IMO fantastic in that she discusses it from a really holistic POV and provides so much insight into the manifestations etc. I would LOVE to send you the section!! if you want i can photocopy it and send it over OR if you prefer i will get DH to do a PDF and i can email it to you...let me know if you are interested!

As for the mirena, that must of been disappointing for you to have them both say no. do they not realise that there are other types of contraception out there lol?

[chris]

Hi Clare
Congratulations!!! It just took a second look before it sank into my foggy brain....
I am soo happy for you!!! I hope you have a wonderful problem free pregnancy.

I would love a copy of the Endo information. I will PM you about it.

I am very disappointed with the Mirena, I hoped that one of the Dr's would remove it.
I know there are so many kinds of contraception around but most of them are hormonal and tend to have bad side effects on me. I just wish I could stop the bleeding.

Again congratulations, I am so happy for you!!!
Take care
Chris