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Post by willow82 on Sept 7, 2012 20:25:30 GMT -5
Back in March I posted about me recognizing that my periods weren't right, for the whole story feel free to read my intro. My GP has been convinced since Spring that I have Endometriosis. I saw my mother's old gynecologist in April and she thought it was a possibility though wanted to wait on doing a laproscopy and sent my for a pelvic ultrasound and put me on Lo Seasonique so I would skip periods. The medication didn't work as planned. I continued to have spotting and periods of bleeding the entire time I was on it. The first pack I had very little pain. Two weeks into the second pack my gastrointestinal symptoms returned (bloating, severe gas pains, constipation, stomach cramps), and then my lower back pain and leg pain returned. Also by two weeks in I was bleeding daily. By the middle of last week it was so bad I stopped the medication, and now things are worse than ever. My awesome GP got me in with a gynecologist who specializes in endometriosis and laproscopy. I saw the gynecologist Thursday and he wants me to have a laproscopy, hopefully by early October. My bleeding stopped on Monday, but I'm still having a lot of symptoms: - severe lower abdominal pains, occasionally sharp pains - bloating - sharp gas like pains - constipation - pain 10-15 minutes after I eat - no appetite - on and off again nausea - constant lower back pain, the more I move the worse it gets - aching in both legs - an awful pain I don't no how to describe running from my right groin into my thigh Usually by now I'm having some back pain and leg pain but it's manageable, and I have some stomach issues but not this bad. Typically I have fatigue and some irritating and manageable pain the week before and the week after my period, this is the worst it's ever been. Did bleeding so much while on the pill make it worse?I'm allergic to NSAIDS, so I have a perscription for hydrocodone, it has been making things bearable. I try to take no more than 3 tablets a day. I'm trying to figure out how to fix the constipation, took Milk of Magnesia a few hours ago, and hoping. I'm willing to try anything to get my bowels moving again, if anyone has any tips. My ultrasound also found a golf ball sized fibroid on the fundus of my uterus, my uterus is also tilted. So essentially this fibroid is right near my spine. The doc said this could account for some of the back pain, but he still thinks this is endo. Based on my two recent physical exams (with mom's gyn, and new gyn) all my female organs are still moving and where they should be. My gynecologist said this was encouraging. Could this mean too I don't have endo?I feel absolutely crazy right now, this whole past week and a half has felt like a nightmare. At times I feel like it's all in my head. I feel like I am just being weak because I have been able to buck up and deal much easier in the past (and without pain meds at that!). Part of me wonders if all the docs and I are just barking up the wrong tree, maybe I got a relatively small fibroid in a terrible place, and something else wrong with my digestive track. I just need perspective. I know even if this isn't it the lap is worth it just to get that fibroid out. The gyn says he would be surprised to not find endo, and my GP says he's 95% sure. And I can't figure out why at this point I'm so full of doubt.
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Post by semicolon on Sept 8, 2012 9:16:17 GMT -5
Willow, you're not crazy. Symptoms can hit a point where they get really bad because endo is a progressive disease. That is why many women are not diagnosed until late 20's up to even their 40's. The pill probably didnt make it worse, it just didnt get bettter. I would strongly advise you to find someone really skilled in endo in case it is endo, as you will want it removed. A good question is whether or not a doc is prepared to remove endo if it is found on the bowel. You are totally normal to have doubt, I think we have all felt that way at some point before diagnosis! I think the lap is the next step to know heat you have and what you don't.
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Post by willow82 on Sept 8, 2012 9:44:47 GMT -5
This doc is comfortable with endo on the bowel, if there is endo on the bowel it may be left in and attempted to be shrunk with lupron first. He said usually it is a second procedure. They try to be very careful with endo on the bowel. He explained they don't want to weaken the walls of the bowel or puncture them. He has removed endo on the bowel, and even done bowel resection.
However, my GP is is happy with how this practice dealt with his daughter's and niece's endo. They're very well reviewed, award winning, and the women's center at the hospital has an excellent reputation. So I trust this doc to do what needs to be done. The practice as a whole has an approach of aggressively treating endometriosis.
I'm just floored that the pain isn't going away.
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Post by JC on Sept 8, 2012 13:17:05 GMT -5
Please don't feel like this is all in your head. Your pain is very real and needs to be addressed which sounds like you have a great couple of doctors who are taking you seriously. I think the lap sounds like a good idea so you know exactly what you're dealing with.
To address your question about the pill, I don't think it could make your endo worse but some of us really can't tolerate any form of hormones and get really sick from it, including bleeding. Maybe it just didn't agree with you? Also, going off the pill is no walk in the park! Your body has to normalize when going on the pill, AND when going off the pill. It's even worse if you go off of it in the middle of a cycle. It's AWFUL! Like Semi said, endometriosis has potential to get worse which could cause an increase in pain. That doesn't mean your endo is getting worse though. Your increase in pain could be a number of things. If you are dealing with daily pain, your pelvic muscles could be really tight in some places causing misalignment in your overall structure, especially if you are modifying the way you sit and the way you walk to accommodate all of the pain you are in. That alone could cause lots of pain! This is one of the reasons why we like pelvic physical therapy to identify some of these structure abnormalities, especially in the pelvic region.
Your bowel symptoms can also be a number of things and unfortunately it's really hard to say what exactly is causing it. Endo can certainly cause all of your symptoms. Have you ever been tested for food allergies? Also, did you know that hydrocodone causes constipation as a side effect? Personally, when I had to take prescription narcotics after a surgery, I had to use suppositories to get things moving which is not fun. Fiber supplements also help me a great deal or just increasing fiber in my diet. I would ask your doctor if suppositories are ok to use before you try it though. You have so many bowel symptoms that I would be cautious with what over-the-counter stuff you try before talking to your doctor. You don't want to make those symptoms worse!
I think what you need most right now is to just get a little plan going. What are you going to address now and what will you address after your lap? You won't know what you're dealing with until you have the lap so you can focus on what you can do now to keep you comfortable which would be to get your digestion issues addressed and manage your pain better. Do you think your doctors will send you to a GI to rule out any digestive diseases? Maybe they can refer you to one after your lap if the surgery doesn't give you relief.
You can at least rest assured that you have a good team of doctors that you trust. That's really helpful when you're stressed and worried about what is unknown. Just try and figure out what you can address now and see what your options are. Don't think you are weak! You are in pain and that makes life so difficult! I really hope that the lap gives you the answers you need to get back on your feet again.
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Post by willow82 on Sept 8, 2012 17:01:53 GMT -5
My docs are pretty certain my digestive issues are likely related to my probably endo. Until now they tended to be focused right around my period worsening the week before, and relieving the week after.
I'm vegan, nearly never eat processed foods, I do eat soy, but not tons of it. Most of my protein is chick peas and black beans, I make most of my food from scratch. My boyfriend has Chron's and has only had one minor attack since switching to my diet 3 years ago, prior to that he was in and out of the hospital. Until 2 years ago I was way healthier, and even my periods were a bit easier for awhile.
I used milk of magnesia which my gyn's office recommended. I was able to go, and it did relieve some of the pressure, but I'm still hurting today.
I'm being cautious with the hydrocodone due to the constipation side effect. However, this has been a regular thing around during and right after my period for at least 2 years. I had it about this bad exactly 2 years ago. Couldn't go for at least 3 days, and then viola my period started.
I think my docs are so sure I have it due to having severe dysmenorrhea since my period started. I left school early A LOT, also would have to go home because I bled through my clothes. Severe gastric problems right before my period began when I was 18 or 19, and I started having clots around then too.
I am thinking my muscles are getting pretty locked up, and I'm trying to work on that today and tomorrow. However, I'm still getting awful spikey pains over my uterus. I keep trying to walk and move normally. Without any pain killer that's impossible, and sometimes it just is impossible. My right leg isn't always into cooperating.
In the past it's been impossible to work on my leg or lower back until the episode is pretty much over. Once I feel the pressure start to ease out of my abdomen, exercise and a bit of massage and it's all back to normal.
I'm losing some of the bloat weight though, I went from 160 on Monday to 155 today.
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Post by JC on Sept 8, 2012 17:26:44 GMT -5
It will be nice to know exactly what you're dealing with after the lap! It's really good that you are paying attention to when your symptoms get worse in your cycle. That helps a lot. Diet is also a huge part of finding relief. My best friend also has crohn's disease and I know how awful those flare ups can be. It's also nice to have a boyfriend that understands having to be on a strict diet.
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Post by semicolon on Sept 9, 2012 7:23:31 GMT -5
I'm glad you have a doc who seems knowledgable. But I will say, Lupron typically may help temporarily but does not "shrink" endo legions (plus Lupron had a boatload of crazy side effects- make sure you research it before you take if you haven't before). I would push for your surgeon to be aggressive and remove all endo. I've had a ton of bowel work (resection and excision of end) and the bowel is surprisingly robust! You do want a very careful surgeon though, but any endo left on the bowel is going to continue to cause issues (obviously). Have you ever done pelvic physical therapy? That might help with your pelvic floor muscles. But I would go for the lap first for a diagnosis to really know what is going on. I am currently having bowel issues off and on and am wondering about collitis- I think it is all originally due to endo and years of inflammation. Crohn's is tough, but at least you both can understand each others issues and support each other.
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Post by willow82 on Sept 9, 2012 12:21:20 GMT -5
I'm hoping I'm reaching the other side of this episode. Still having some pelvic pain, but I think my back is starting to improve. No meds so far today! It's improvement that the pain is now above the right knee, and now starts a few inches below my belly button. I've had no bleeding for almost a week.
I have researched Lupron, and I don't want it. When I call to schedule I'm going to make sure that message is passed along. I think mainly he saves for a second procedure to have a gastro doc on board. I'm also going to make sure they do excision! (fairly certain they do but nothing wrong with a double check)
I'm interested in pelvic physical therapy, also interested in getting fully back into yoga. Gonna try and get my legs back in working order today.
I am desperate for the lap, just for the confirmation. Especially since my physical, and ultrasound were normal other than the tipped uterus and the golf ball of a fibroid.
Monday I'm also going to see if my PCP wants me to see any other specialists before proceeding with surgery. He's been talking about MRI to make sure my spine is ok.
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Post by willow82 on Sept 11, 2012 9:41:47 GMT -5
My laproscopy is on October 2nd! Thank you guys so much, talked with the office and yes their primary method of endo removal is excision. Right now think I am actually on the other side of this episode, my whole pelvic area feels bruised, but it's better than yesterday. I can take a deep breathe without wincing Walking, turning from side to side, and bending my torso is still really tender, but I'm not wincing like yesterday. Doc's office told me to eat 6 small meals/snacks a day, heating pad, and walk about a mile a day to try and keep the muscles loose. I'm hoping this bruising like pain gets better in a few days.
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Post by JC on Sept 12, 2012 4:47:39 GMT -5
Yay!! Sounds like they want to get to the bottom of it!! I'm glad you are feeling better too!
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Post by willow82 on Sept 21, 2012 9:03:04 GMT -5
Not a great update:
Middle of last week I was feeling a bit better. Then Thursday when the pain got so bad that I couldn't sleep. Friday was also really bad, and I had to call out of work for most of the day. Saturday I slept most of the day, and my pain went down to a 5-6 Sunday so I made up more of my work hours and overall had a nice evening. Sunday night the pain was again so bad that I could not sleep. Monday I went to work anyways.
Within a few hours I started getting these terrible cramping pains that felt like they were in my intestines, and a stabbing pain through my pelvis. It was different than anything I had been through before. I was just bent over myself and crying at work. I took my pain medicine, call my PCP and gyn and they recommended I go to the ER.
At the ER they gave me morphine and anti-nausea medicine, which brought the pain down except after I walked, or after my pelvic. I was just starting to sleep when the morphine wore off, and just started crying again. At this point I hadn't slept in over 36 hours from pain.
They did a CT, they did some blood tests, urine tests. Nothing.
I had a consult with the gynecology department on managing my pain until surgery and I was told to take my pain medication on a regular schedule, not wait until I was in pain.
Slept some on Tuesday, forced myself to poop with laxatives thinking maybe some of it was constipation (hadn't gone in over 2 days), also threw up. The next day I was still having the same pain as Monday. I tried to go to work, and would have to lean on my desk every 5 to 10 minutes due to spasms.
Called my GP to update them, they wanted me to come in.
I asked if there was anything other than endometriosis that this could be. He ran through the options, all were covered by tests in the ER. He said he was going to call the gynecologists office to see if surgery could be moved up.
He gave me a script for anti-nausea meds, and for oxycodone, which I returned to the pharmacy.
I've barely been able to work this week. My medicine works and knocks my pain level down a couple levels. Though I'm still in constant pain and it worsens, if I move in any way. After I eat, and going to the bathroom (#1 or #2) is extremely painful. My bloating is returning, my back and leg pain is worsening. The fatigue is awful. Thankfully the anti-nausea meds are allowing me to eat again, and if I time it right with the pain meds there is less pain after I eat. If I had to guess I am pre-menstrual.
Before those stupid birth control pills it was NEVER this bad. I am hoping this is temporary, just my body freaking out from coming off the pill.
I am PRAYING it gets better, I hate taking time off of work. This week I have been totally useless.
Still no word from the gynecologist's office.
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Post by JC on Sept 21, 2012 18:02:20 GMT -5
Oh wow that sounds awful! I'm so sorry that happened! How scary!
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