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Post by ruby100 on Nov 27, 2013 11:37:39 GMT -5
Hi, I'm new here, nice to meet everyone I feel so incredibly let down by the treatment I received and literally don't know where else I can turn to at this stage. Im so glad I found this board as I don't think anyone really knows what you go through unless you are in the same situation. After suffering for 17 years I was diagnosed in Oct with stage 3 endo. I booked an appointment privately with a consultant after asking my doctor for years to refer me. It cost a fortune even with health insurance but I thought it would be wort it. I feel so let down by my doctor... After my op he told me I had stage 2-3 endo. He said it was between my bladder and uterus and the back of my uterus and that my tubes were good. I was so relieved that my reproductive organs were ok and also relieved that I had an answer after all these years. He told me at my first appointment that once he lasered everything off I would be 'all sorted'. Luckily I didn't believe this as I know well there is no cure for endo but thought this was very careless of him to say. After lots of hassle with his secretary (who sent my post-op appointment details to the wrong person so I missed it meaning I had to wait another 6 weeks), I arrived for my post-op appointment. He told me I had stage 3 'severe' endo. He then told me it was on my cervix, bladder, ovary and back of womb. I was in shock, why didn't he tell me this before? Also I thought stage 3 was moderate? My tubes are still good and nothing glued together etc. so would that still be classed as severe? I'm so confused! He then handed me a prescription which was already filled out for decapeptyl. He said I would be 'a new woman' after this and it would just shut down my ovaries for a while. Side effects - I might get some hot flushes. He gave very little information about it and was reluctant to discuss any other options with me (or even ask if I wanted a family soon!). I don't know what came over me but I was just so upset and could hardly even speak. Not at all what I was expecting, I thought he would discuss my options with me but I was out of there in a matter of minutes. Anyway after researching decapeptyl I decided not to take it, it was not going to 'cure' me and the side effects weren't worth it for me. Sometimes I feel guilty or weak for not taking it and I hope it doesn't affect my chances of having a family but I just couldn't go through with it in the end. I went to my doctor shortly after and I'm now taking cilest. My first period after the lap was awful, it felt like I hadn't anything done so I wanted to do something to try and control it even though I hate taking the pill! I've had bad nausea, vomiting, swollen breasts and even swollen ankles from it! but I'm only on it a few weeks so I guess I'll just have to wait and see if it suits. I just feel so down about it all
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Post by JC on Nov 28, 2013 20:17:51 GMT -5
Hello and welcome! I'm really sorry to hear about your experience. That's the one really crappy part about endo is that you never know how a medication will work for you until you try it. Some people have great success on these medication treatments, others get all the side effects and feel terrible. You just never know The first period after a lap is horrid. I'm glad you got through it though. All of this is really tough to handle so I'm glad you reached out to us for support. It really helps to have people who understand.
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Post by willow82 on Nov 29, 2013 19:56:17 GMT -5
The first 2-4 periods after a lap, especially if endometriosis was removed, are particularly ferocious. The first period I had after my lap was one of the worst I have ever had in my life.
Stage III endo can be informally called severe, mine was stage III as well, and was often referenced as severe as it was hard to beat back, regrew quickly, was deeply infiltrating. Stages III and IV have some hurdles associated with them, that are less common than in I and II, and are often grouped together when it comes to treatment of endometriosis.
In stage III and IV there is a higher probability that there are microscopic pockets of endometriosis, or very deep endometriosis. So many surgeons recommend a course of drugs to suppress ovarian function afterwards to give the body a full break from the endo, and encourage the remaining cells to shrink and potentially die. Endometriosis is an estrogen dependent condition, so hormone suppression causes endo cells to shrink and ideally become inactive.
Please read up on the forums and learn as much as you can about this disease, as it can regrow, and is often an ongoing issue and illness.
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Post by ruby100 on Dec 1, 2013 17:21:05 GMT -5
Thanks so much for the replys. Unfortunately I know all too well that endo grows back and is ongoing, I guess I can just hope mine won't come back too quickly and that I will get some pain relief. I know some surgeons prescribe decapeptyl, lupron etc. and then others are completely against it. I guess the side effects would definitely be worth it if it got rid of it but it doesnt. I'm on the pill for 3 months now without a break so hopefully that slows things down. Has anyone used decapeptyl after surgery and how did you find it? Were the side effects worth it?
That makes sense about stage 3 endo, I guess 3 and 4 can both be classed as severe (unfortunately for us!). It was just a surprise to have gone from stage 2\3 after my op to stage 3 'severe'. I've gotten so much conflicting information over the last few weeks. He also said it won't affect my fertility but how can that be? especially since it was on my ovary and cervix.
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Post by willow82 on Dec 2, 2013 21:19:17 GMT -5
On Lupron:
I did not start Lupron immediately after surgery, but 3 months after when all my symptoms began to return. With addback medications the Lupron side effects were tolerable and it was worth it to me to get my body mostly back, even if it was temporary. Lupron also provided time and evidence of what was going on.
Most of my pain was eliminated while on Lupron, the rest was taken care of by physical therapy. However, when my shots were due I would have some breakthrough symptoms, and my symptoms came back almost immediately after stopping the shots. However, I also was restarted on fairly high dose estrogen BC a week before stopping injections, and was on the lowest dose which clearly based on my breakthrough symptoms providing minimal suppression.
In my case Lupron helped show that my pain was connected to estrogen levels, and specifically that I likely had adenomyosis in addition to endometriosis, and I had a hysterectomy.
I had a new but small endometrioma as well. I had my hyst 10 months after my excision surgery, and less than 2 months after stopping Lupron.
It did not work great for me as a long term suppression agent, but in the short term I had a lot of benefit.
On fertility:
Endo usually starts on the very surface layers of internal organs, in some stage III and many stage IV cases it can go past the superficial layers, but even then in many cases, especially stage III fertility can be preserved by cutting the endometriosis out.
On Staging:
A lot depends on the pathology report, a good gynecological surgeon will take anything that looks like endo and take wide margins of tissue to be thorough. Until the results are back from the lab it's hard to know how much was actually endometriosis.
That being said an experienced surgeon with endometriosis can often remove less tissue and still get all the endo, which is ideal, but hard to find.
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Post by chibineko717 on Dec 3, 2013 19:12:15 GMT -5
Welcome! Each doctor seems to stage endo differently. My doctor stages it based on how deep it is. Some other doctors stage it based on where the endo is found. I have stage IV, but my tubes are open. Others have been able to conceive even with severe endo. A good endo doctor can excise a lot of endo to help preserve fertility.
I was started on lupron about 4 months after my 1st lap. I did not have bad side effects, but the pain came back during my third month on it. I had a cyst rupture on the 4th month. I had surgery the 6th month I was on it and for 2 months after my second surgery when I decided to stop. It is expensive and my old doctor said that she put in an over ride for my insurance to pay for it, but she did not.
You just need to try what works best for you. I hope you receive better treatment in the future.
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Post by ruby100 on Dec 8, 2013 18:27:39 GMT -5
Thanks for the info girls, I'm so sorry you've had to go through all this. I'm currently on my second pack of cilest with no break and I feel miserable. Stomach is bloated and sick all the time, no energy, extremely sore breasts and I'm starting to have back pain and cramping. I'm finding work difficult and feeling really down about everything. Were going to try for a baby next year so I just hope it doesn't come back too soon. That's another reason why I decided against decapeptyl. My gp said it won't grow back that quickly but from what I've read it varies a lot. That's terrible about the insurance, as if you haven't enough things to worry about. My doctor never mentioned cost at all and I would have got a bit of a shock! Its only when I read up on the drug I realised the expense. Hopefully I will find a better consultant, I've just waited so long for a diagnosis and now I still feel in the dark with no answers.
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Post by princessbritain on Dec 15, 2013 9:05:41 GMT -5
Hey, My names Ali, sorry you are having a hard time *big hugs* That sounded pretty bad for the surgery to mess your appointment up like that because 6 weeks is a pretty long time and if your in pain too? That's terrible. Also could of things changed in those 6 weeks? I swear sometimes some medical places couldn't find their bottom with both hands! I have early stage Endo so I'm guessing 1, however I have been in unbelievable pain this year, nearly blacked out a few times. Luckily my Dr is just amazing and honestly I couldn't ask for better and I dunno if it's because he's a man but yeah he's fab, women are great but I dunno all the men Drs I've had seem to listen more :/ I'm about to start Lupron for about 6 months, I should of started next week but I've had to make a conscious decision to wait another month because I'm leaving the country for 11 days to go back to the UK and it's a extremely busy trip. Yeah I'm going to be in pain and all the other symptoms but because this would be my first shot of Lupron I just didn't know how I would react. My dr thinks I should be thinking of starting a family, probs incase it does get worse so maybe in a year n a half, scary lol This seems like a really great supportive group, you have come to the right place xxxx
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Post by ruby100 on Dec 17, 2013 11:39:29 GMT -5
Hi Ali, nice to meet you So sorry to hear you have been in pain and I hope you are doing well. I feel so let down by my doctor and I am so angry. I was in terrible pain and still am. He told me once the operation was over I would get good relief but I feel no better at all. I just started my period today (first period on cilest) and I have so much pain especially on my bladder. I'm still hoping that in a few months things will get better after the lap but it's hard to stay positive sometimes He prescribed Decapeptyl for me (which is like Lupron I think) but I decided against it because we want to start a family soon and I was terrified of the side effects. It's still something I could explore I guess and I would like to hear your experience on Lupron. I know some women get on great with it and hopefully you will get on fine with it and get some much need relief xxxx
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Post by princessbritain on Dec 19, 2013 16:29:17 GMT -5
Hi Ali, nice to meet you So sorry to hear you have been in pain and I hope you are doing well. I feel so let down by my doctor and I am so angry. I was in terrible pain and still am. He told me once the operation was over I would get good relief but I feel no better at all. I just started my period today (first period on cilest) and I have so much pain especially on my bladder. I'm still hoping that in a few months things will get better after the lap but it's hard to stay positive sometimes He prescribed Decapeptyl for me (which is like Lupron I think) but I decided against it because we want to start a family soon and I was terrified of the side effects. It's still something I could explore I guess and I would like to hear your experience on Lupron. I know some women get on great with it and hopefully you will get on fine with it and get some much need relief xxxx Ah it's okay we all are in pain hey :/
I got maybe like a week an a lil of relief? but they didn't do anything other then diagnose me during the lap but my pain is slowly creeping back, If only Endo was a person then we could all join forces and beat it to death
Haven't heard of that medication but I am a newbie with this Endo stuff, learn new things all the time! I actually made a decision to hold off my treatment till I return from the UK (going home on Monday for 10 days) not because I'm not in pain or exhausted but because I didn't want to risk being in another country incase something where to happen but I will be starting my Lupron end of Jan and soon as I do I will update you on it. Let me know how you get on with it. To be honest by the looks of it I don't think there is any miracle treatment, they all seem slightly dodgy and a gamble, I don't want to start a family for about a year and a half so I think that's why he recommended that.
It can be hard to stay positive and especially when you have people making it out like all you have is the common cold but we just gotta do what we gotta do and deal with it the best way we can. Life isn't about the hand of cards you're dealt, it's about how you play them
XOXO
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Post by ruby100 on Jan 2, 2014 9:50:28 GMT -5
That's true You're so right, it's really important to stay positive with this horrible disease! I think one of the worst things sometimes is people just don't understand, it feels like my doctor doesn't even really get it! Looks like I'm in a good place here though Best of luck with your treatment, I'd love to hear how you get on with it. I'm going to my doctor next week to discuss switching pills or maybe trying depo or something like that. Still not sure about decapeptyl (or lupron). The pill I'm on at the moment is making me miserable and the pain seems even worse so will see what she says. Take care xx
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Post by nibletz on Jan 3, 2014 12:26:39 GMT -5
Have you ladues tried yoga? To help relaxation may help with the positive vibes and meditation normally helps me just some quiet peaceful time some calming jazz and breathing thinking of all the good things in lifei hope you find some relief it can be hard especially when even doctors who claim to know about health dont listen or tell you its in your head hugs too all xxx
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Post by princessbritain on Jan 6, 2014 13:09:22 GMT -5
Aye Ruby, When ever I try to explain to my friends about Endo they always respond with "yeah but that's worse case scenario" or "just be positive" sometimes I just think people enjoy being ignorant. I eve got told "it's just a inconvenience" or "it will just make it harder for you to get pregnant" it's like are you freaking serious? they don't understand the pain we go through, they don't get the emotional damage. I'm going slightly off topic but yeah you are right, they don't understand.
Nibletz: I really wanted to do yoga but by me it's $15 a sesh :/ which is a little steep if you wanted to do it more then once a week, so maybe I should try a dvd.
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Post by nibletz on Jan 7, 2014 12:38:20 GMT -5
Ali i totally get it when you say people dont understand only recently when id given up explaining it my hubby took over and they actualy got it!! Like i was iver exxagerating..
youtube have some good videos for home yoga so check it out i hope you all find something that helps xxx
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