Stayseeliz Posted December 2, 2012 Share Posted December 2, 2012 I've posted on here about my struggles before. I was told after an endometrial biopsy in 2007 that I probably had endometriosis but I was newly pregnant so they didn't do anything about it. I've been having pain since the first of the year and ended up in the ER for the pain in July. They ruled out everything "scary" and the dr said her best guess was endometriosis. I finally got into a new GYN this week. My old GYN of 10 years quit taking my insurance so I had to go somewhere new. This new dr didn't even examine me beyond pushing on my stomach and listening to my lungs. They said there is no way my insurance will pay for surgery until we try to treat it "medicinally" first. They want to put me on birth control pills and ibuprofen around the clock during my period. I'm not opposed to the ibuprofen if that will help but I'm NOT taking birth control pills at almost 36. I also have slightly elevated blood pressure and I know that causes complications with birth control pills. I am SO frustrated with this new doctor. I am going to take the ibuprofen when AF starts next week to see if that helps but I need advice on other ways to treat this. I've read that weight loss helps and I'm going to hit it hard again after Christmas so hopefully I can get 20-30 lbs off. I already eat organic as much as I can. Any other ways to deal with this? I'm beyond frustrated. I'm still hoping after a couple of months of treating it "medicinally" they'll be willing to do surgery. But I'm not holding out hope. I am trying to get in with another GYN in my area but it's going to take months to get a new patient appointment with them. Thanks for any advice! Quote Link to comment Share on other sites More sharing options...
lovinmomma Posted December 2, 2012 Share Posted December 2, 2012 The ibuprofen has helped me. Not enough but it's all I can do. Caffeine makes it worse, so I hear. I take red raspberry leaf, too. Quote Link to comment Share on other sites More sharing options...
lovinmomma Posted December 2, 2012 Share Posted December 2, 2012 I should say about the ibuprofen that even though it does help some, I don't just get cramps on my period. I get then before, during, after, and when I'm ovulating. If I took ibuprofen evert time I needed it the lining of my stomach would be shot. So, I still have to just deal with a lot of the pain. My doc prescribed 6 ibuprofen every 4 hours. Did the doc say anything about tramadol? It's a non-narcotic pain reliever. Quote Link to comment Share on other sites More sharing options...
lovinmomma Posted December 2, 2012 Share Posted December 2, 2012 Sorry for the typos. I'm on my phone. Quote Link to comment Share on other sites More sharing options...
HollyDay Posted December 2, 2012 Share Posted December 2, 2012 hmmmmm. Will the new doc order labs to determine your hormone levels? Have you had thyroid levels checked? Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted December 2, 2012 Share Posted December 2, 2012 Would you really have to take the bc pills? I would probably get the prescription, but not take the pills, and say how miserable I still was at my next appointment. If they are trying to manipulate you because of the insurance company's rules and regs, you can manipulate them right back. My old ob/gyn put me on bc pills and I got the worst rash ever from them. I only took them for about 10 days. I took photos of the rash and showed them to him at my next appt. He then scheduled a laparoscopy to rule out endometriosis. He actually apologized to me following the procedure for not listening to me. I had the worst case of endo he had ever seen. He then sent me for a consultation with two specialists who were to try to remove it. I hope you are able to get the help you need. Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 2, 2012 Author Share Posted December 2, 2012 The pain originally started during ovulation then at random times and has settled for the most part during AF. He didn't mention tramadol. He was actually rather rude. He talked down to me and said that there is a lot of variation as to what's normal when it comes to bleeding and pain and mine probably isn't that bad. Sigh... I am hypothyroid and take Armour Thyroid for that. He didn't do bloodwork beyond pricking my finger. I am eager to see someone else at this point. I mean who goes in for a new GYN appointment and they don't even examine you when you're having issues? I am up to date on my pap but seriously.. Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 2, 2012 Author Share Posted December 2, 2012 Would you really have to take the bc pills? I would probably get the prescription, but not take the pills, and say how miserable I still was at my next appointment. If they are trying to manipulate you because of the insurance company's rules and regs, you can manipulate them right back. My old ob/gyn put me on bc pills and I got the worst rash ever from them. I only took them for about 10 days. I took photos of the rash and showed them to him at my next appt. He then scheduled a laparoscopy to rule out endometriosis. He actually apologized to me following the procedure for not listening to me. I had the worst case of endo he had ever seen. He then sent me for a consultation with two specialists who were to try to remove it. I hope you are able to get the help you need. Honestly I plan on going this route at my next appointment if need be. If the ibuprofen doesn't do the trick when I am seen at the first of January I will get a script for BC pills if they are insistent on it and not fill in but let them think I did. I don't want to be manipulative but I KNOW my body doesn't like BC pills. I've tried them several times and my body just doesn't like them. I also don't like the risk associated with them. Quote Link to comment Share on other sites More sharing options...
Farrar Posted December 2, 2012 Share Posted December 2, 2012 I completely messed up my stomach taking massive doses of ibuprophen for endometriosis related pain. So I don't really recommend that option myself. Doctors are jerks. Can you try a new jerk? Also, my understanding is that surgery isn't usually a good option anyway, but that was from several years ago. Mine was, luckily, "cured" by pregnancy. Quote Link to comment Share on other sites More sharing options...
lovinmomma Posted December 2, 2012 Share Posted December 2, 2012 The pain originally started during ovulation then at random times and has settled for the most part during AF. He didn't mention tramadol. He was actually rather rude. He talked down to me and said that there is a lot of variation as to what's normal when it comes to bleeding and pain and mine probably isn't that bad. Sigh... I am hypothyroid and take Armour Thyroid for that. He didn't do bloodwork beyond pricking my finger. I am eager to see someone else at this point. I mean who goes in for a new GYN appointment and they don't even examine you when you're having issues? I am up to date on my pap but seriously.. This bolded part is not ok. Find a new doctor. Period. I do have to say that even though I have had surgery for endo..I still have it. Pregnancy helped prolong it and it took a couple of years after my youngest before I was in intense pain again. If I have another child I'm not sure if I will need to have surgery in able to get pregnant again. My doctor did tell me that the amount/degree to which they find endo during surgery is not what determines the amount of pain you will be in. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted December 2, 2012 Share Posted December 2, 2012 :grouphug: Due to infertility issues I have had the surgery 3 times. They never get it all and it comes back quickly for me. When I was a teenager a GP perscribed what is now Alieve for my cramps. For me this still works the best when I am really in pain. I take it sparingly but it really helps when I have to function normally. I hope you find a more sympathetic doctor. Quote Link to comment Share on other sites More sharing options...
jenangelcat Posted December 2, 2012 Share Posted December 2, 2012 Why the opposition to birth control pills? I was put on the pill for endo at 13. The first type I used didn't work and at the next appointment they scheduled for a laparoscopy just to have a look. I was diagnosed with mild endo and they gave me a new bcp prescription. The new pills worked. I went from having 2 month long periods where I had to wear several layers of depends and childbirth level pain to 4-5 day periods with barely noticeable aching on the first day. I didn't stop taking them until I was 25 and wanted to have kids. Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 2, 2012 Author Share Posted December 2, 2012 I know there is no cure for endo unfortunately. I wouldn't mind having the surgery just to go ahead and get the diagnosis and the surgery is supposed to help for at least a little while. I don't want to do the pill because I know my body doesn't react well to the pill, I don't want the side effects, I don't think that should be a "first line" of therapy and the pill for women over 35 especially with high blood pressure can be dangerous. Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 9, 2012 Author Share Posted December 9, 2012 Day 3 of the ibuprofen and I think it's helping the bleeding a bit but isn't even touching the pain. I am so, so discouraged.right now. I have four kids. I need to be able to function. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted December 9, 2012 Share Posted December 9, 2012 There is a website devoted to endo alone with some interesting point of view. I would not let it go too long. I had 10 years worth of it (however no pain until the end before surgery) and it can develop into endometrial cancer. You are probably young and if you want to have more children, you are not looking at anything drastic. For some people, a supplemental dose of Progesterone helps. Has your doctor talked about this? I would also consult a naturopath - I wish I had long before I actually did. It may have saved me from some very unpleasant things. Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 9, 2012 Author Share Posted December 9, 2012 I am 35 and done with having kids. So I don't have to worry about the infertility aspect of this. But I just want to feel better and be healthy. Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted December 9, 2012 Share Posted December 9, 2012 You probably already know this, but many GYN's know little about Endrometriosis. You need to find a doctor who has dealt with it. It is hard to treat. Even the experts don't agree on what works. Your current doctor may be right about your insurance not be willing to cover anything until meds are used. He (or she, I missed that) may have dealt with your inurance company before and has issues with them. I know ibuprophin will not cut it when it comes to the pain. The the pill only works sometimes. But you may have to try it first, for your insurance company's sake. My sister has dealt with this for years, and you'd be amazed at the large spectrum of treatment among the GYN's she has had. Unfortunately, there is no easy or quick answer. It just stinks. But do find a doc who is willing to listen to you, who can at least offer some sympathy and a plan of action. And :grouphug: . Quote Link to comment Share on other sites More sharing options...
1pageatatime Posted December 9, 2012 Share Posted December 9, 2012 They ruled out everything "scary" and the dr said her best guess was endometriosis. This new dr didn't even examine me beyond pushing on my stomach and listening to my lungs. They said there is no way my insurance will pay for surgery until we try to treat it "medicinally" first. They want to put me on birth control pills and ibuprofen around the clock during my period. I'm not opposed to the ibuprofen if that will help but I'm NOT taking birth control pills at almost 36. I also have slightly elevated blood pressure and I know that causes complications with birth control pills. :grouphug: Please find a new doctor. This approach to the possibility of Endo is extremely negligent, and reveals significant ignorance. Had I listened to uneducated advice like that, I'd be dead. OOps-let me find a helpful link.....http://www.vitalhealth.com/ Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted December 9, 2012 Share Posted December 9, 2012 I had the procedure to clean it up several times, one time being 5 weeks after a pregnancy that was supposed to help it not get worse. It was EVERYWHERE and horrendous. My doctor at the time was pretty rough about not understanding the degree of pain. Oh, btw, that "cleaning out" was supposed to be a hysterectomy but the stupid insurance was upset about my age. So then I went through 17 years of hoping beyond all hope for another pregnancy on top of the physical pain. Anyway, it did finally get a little better but I have no idea why. Just did eventually, after years of barely being able to walk most of the time. Last February, I started having other issues and my doctor (different one) yanked everything out. The difference in how I feel physically is amazing. I really did get used to an amazing amount of discomfort, barely noticing til it was gone.... BTW, I also had two other conditions that could have contributed to (or even been most of) the pain. The one was something guessed about before, but they were both things that you really have to yank everything to find out for sure. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted December 10, 2012 Share Posted December 10, 2012 I am having an ultrasound on the 20th to see why I am having pain every single day now. My doc mentioned that I could be dealing with endometriosis. I thought I was too old to develop it, I'm 38. When I was younger I had very long and painful periods. I easily conceived all four of my children. A few years ago I began having horrendous periods. I ended up having a very thick lining in my uterus. The doc did a D & C and my symptoms improved drastically. Now I have begun having cramps almost every day. Most of the time its annoying but i can deal with ut but a couple of days a month I'm in a great deal of pain. I have given birth with no pain meds so I feel like I know what pain is. Normally it's a dull achy pain but when it gets bad it is very very sharp. Also I feel a lot of pressure. Also I have a lot of rectal pain (I know TMI). I just dot know what I am dealing with. Does this sound like endometriosis to anyone? Quote Link to comment Share on other sites More sharing options...
1pageatatime Posted December 10, 2012 Share Posted December 10, 2012 I am having an ultrasound on the 20th to see why I am having pain every single day now. My doc mentioned that I could be dealing with endometriosis. I thought I was too old to develop it, I'm 38. When I was younger I had very long and painful periods. I easily conceived all four of my children. A few years ago I began having horrendous periods. I ended up having a very thick lining in my uterus. The doc did a D & C and my symptoms improved drastically. Now I have begun having cramps almost every day. Most of the time its annoying but i can deal with ut but a couple of days a month I'm in a great deal of pain. I have given birth with no pain meds so I feel like I know what pain is. Normally it's a dull achy pain but when it gets bad it is very very sharp. Also I feel a lot of pressure. Also I have a lot of rectal pain (I know TMI). I just dot know what I am dealing with. Does this sound like endometriosis to anyone? Yes. It also sounds like bowel-endo. :grouphug: An ultrasound is useless in determining Endo. The *only* tool to diagnose it is to have an exploratory Laparoscopy. Quote Link to comment Share on other sites More sharing options...
1pageatatime Posted December 10, 2012 Share Posted December 10, 2012 I had the procedure to clean it up several times, one time being 5 weeks after a pregnancy that was supposed to help it not get worse. It was EVERYWHERE and horrendous. My doctor at the time was pretty rough about not understanding the degree of pain. Oh, btw, that "cleaning out" was supposed to be a hysterectomy but the stupid insurance was upset about my age. So then I went through 17 years of hoping beyond all hope for another pregnancy on top of the physical pain. Anyway, it did finally get a little better but I have no idea why. Just did eventually, after years of barely being able to walk most of the time. Last February, I started having other issues and my doctor (different one) yanked everything out. The difference in how I feel physically is amazing. I really did get used to an amazing amount of discomfort, barely noticing til it was gone.... BTW, I also had two other conditions that could have contributed to (or even been most of) the pain. The one was something guessed about before, but they were both things that you really have to yank everything to find out for sure. :grouphug: Quote Link to comment Share on other sites More sharing options...
Twigs Posted December 10, 2012 Share Posted December 10, 2012 Stacey 1st :grouphug: :grouphug: , I'm sorry for your pain. But please, please, please, don't deceive your doctor. It's bad that we have to deal with one-size-fits-all-cookie-cutter medicine based on insurance protocol (rather than our personal doctor's wisdom & training) but that is what most of us have. Deceiving your doctor could result in more harm to you. Please don't risk it. … I would probably get the prescription, but not take the pills, and say how miserable I still was at my next appointment. … :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted December 10, 2012 Share Posted December 10, 2012 Yes. It also sounds like bowel-endo. :grouphug: An ultrasound is useless in determining Endo. The *only* tool to diagnose it is to have an exploratory Laparoscopy. Thank you for the info! Didn't mean to hijack the thread! Elise in NC Quote Link to comment Share on other sites More sharing options...
Omma Posted December 10, 2012 Share Posted December 10, 2012 I stopped seeing my former OBGYN when she told me: my patients who have endometriosis bring in a list of complaints down to the floor.... she had no sympathy and only wanted me to try birth control pills as well. I got a new OBGYN right away after that. I can tell you that doctors will try treating with meds first (even with Lupron). If the pain goes away, then they know that it really must be endo. If you ever do get a laprascopy and they find endometriosis, the most effective technique includes getting it excised (ie cut out with scissors). I'd recommend an endometriosis specialist if it is bad. Do a search at hystersisters.com for more info. Endometriosis is a terrible disease, and I hope you can find some real answers and help. If it is any encouragement to you, I haven't had any endo pain for 5 or 6 years now since seeing a wonderful doctor/surgeon who practically saved my life (well, certainly my quality of life). I had endometriosis all the way down to the ureter and also just ready to perforate the bowel wall, along with all kinds of adhesions and pain. I am doing great now... so there is hope. Hang in there and search around to find the right doctor that can help you... I also want to give glory to God, too, as there were lots of people praying for me at that time! Blessings and hugs, Brenda Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 10, 2012 Author Share Posted December 10, 2012 You know, I really do NOT want to deceive my doctor. I am hoping that they will listen to me. The ibuprofen is NOT cutting it. I think the bleeding is a bit less but NOT the pain. At all. If they insist that I take the pill I don't know what I will do. I am actively seeking another GYN but I'm having a hard time getting into one. I need to call my GP tomorrow and make sure they're still working on it. I just don't think the pill is a long term solution. My sister is seeing a neurologist tomorrow because they think she recently had a stroke. I just don't feel comfortable going on the pill. This is so frustrating. I have 4 kids!! I need to be able to function! Quote Link to comment Share on other sites More sharing options...
lifesadream83 Posted December 10, 2012 Share Posted December 10, 2012 I've posted on here about my struggles before. I was told after an endometrial biopsy in 2007 that I probably had endometriosis but I was newly pregnant so they didn't do anything about it. I've been having pain since the first of the year and ended up in the ER for the pain in July. They ruled out everything "scary" and the dr said her best guess was endometriosis. I finally got into a new GYN this week. My old GYN of 10 years quit taking my insurance so I had to go somewhere new. This new dr didn't even examine me beyond pushing on my stomach and listening to my lungs. They said there is no way my insurance will pay for surgery until we try to treat it "medicinally" first. They want to put me on birth control pills and ibuprofen around the clock during my period. I'm not opposed to the ibuprofen if that will help but I'm NOT taking birth control pills at almost 36. I also have slightly elevated blood pressure and I know that causes complications with birth control pills. I am SO frustrated with this new doctor. I am going to take the ibuprofen when AF starts next week to see if that helps but I need advice on other ways to treat this. I've read that weight loss helps and I'm going to hit it hard again after Christmas so hopefully I can get 20-30 lbs off. I already eat organic as much as I can. Any other ways to deal with this? I'm beyond frustrated. I'm still hoping after a couple of months of treating it "medicinally" they'll be willing to do surgery. But I'm not holding out hope. I am trying to get in with another GYN in my area but it's going to take months to get a new patient appointment with them. Thanks for any advice! Go to another doctor! This is there way of milking the insurance for $ for appointments. Get copies of your records from your old doctor so that you have proof of the history. If you find a good doctor they will submit the proof (and so can you) that you have been diagnosed with endometriosis and get you the appropriate care. Endometriosis is NOT fun and nothing to be messed around with! I wish you the best! Quote Link to comment Share on other sites More sharing options...
Stayseeliz Posted December 18, 2012 Author Share Posted December 18, 2012 Well, I think the ibuprofen helped lessen the amount of bleeding but not the pain. But it caused severe constipation. I just had to go buy something to do a cleanse. It's bad. Bleh. Back to square one. I did get an appointment with another doctor in 3 weeks. I'm excited about that. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted December 18, 2012 Share Posted December 18, 2012 Particularly as your sister has had a stroke, I would not do BC pills at age 35. It is too risky for blood clots. You don't want to add those to your problems. Quote Link to comment Share on other sites More sharing options...
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