The last time I wrote I was in better spirits because I had just learned that the doctors I was going to see were the doctors that were suppose to do surgery on me for my Endometriosis. So much weight had been lifted off my shoulders with this news. I went in there with high spirits only to be shot down. Here's how the appointment went:
New Dr.: Hi Nicole.. tell me about what is going on, your health history, your mom and dad's health history, your bf's health history, his families health history, how your daughter is doing and when you are going to have another child.
New Dr.: Alright let's start off with an ultrasound and go from there.
New Dr.: Okay so, your uterus looks good (SN: I've been told I have a text book looking uterus before - multiple times, by multiple doctors so this was not a surprise), your right ovary looks like it has 25 cysts in it and your left ovary has about 6 in it. So I can see why you are still having pain. You are still ovulating. You may just need to give the Mirena a little more time to kick in. Get dressed and we'll talk across the hall.
Me: PCOS?
New Dr.: your right looks a little Poly cystic but not enough to diagnose.
New Dr.: Have you ever heard of Lupron?
Me: I do not want to take Lupron
New Dr: Can I ask why?
Me: I'm a person who gets the side effects of medication, unfortunately and I've read about Lupron and it can have really bad side effects. I just feel like having all those side effects replacing the pain isn't a pro for me. Plus it's not a guarantee to get rid of the pain.
New Dr: I understand but we've seen it help a lot of patients before.
Me: It's just not something I want to take.
New Dr: Okay, I won't force it on you. Well, it looks like to me that we should try Letrozole along with your Mirena and see if that helps. It's helped in the past with your pain so I think that is a good route. I do not think surgery is the best idea right now.
Me: Why? Dr. Stovall thought it was a good idea and he said you all would do the surgery.
New Dr: I'm sorry he said that to you. He should not have promised you surgery. I just don't think that surgery is a good option now. Last time you only got 2 months of relief. I don't feel like that is enough time to have you go through surgery again. Especially not with a little one to take care of.
Me: But what if it's more this time? Last time I wasn't on any medication after surgery and this time I would be on two. I honestly think this time it will be better.
New Dr: I'm sorry I just don't feel like it's a good idea. Let's try the Letrozole and see if that helps.
Me: And if it doesn't?
New Dr: Other then the Lupron that's all the medication that we try for Endo. We can set you up with Pain Management and they can help control the pain.
Me: Isn't Pain Management just going to control medication? They aren't going to actually deal with what is causing me pain they are just trying to cover up the pain. I want to be cured I do not want to take more pills.
New Dr: Yes, as far as I know, they only deal with Medications. I'm also going to refer you to a Urologist. I think some thing else may be wrong. Endometriosis should not give you pain every day. It should only give you pain through your cycle. That leads me to believe that something else is wrong.
Me: Something else? *tears*
New Dr: I'm not taking away the Endo diagnoses. We know you have Endo but I think something else may be wrong, possibly Interstitial cystitis, which is something with the bladder. You've been to a doctor to look at your bowels, you've seen us for you uterus, the only other thing in that area is the bladder.
Me: So I'm getting referrals to a Urologist and Pain Management?
New Dr: Yes and I'll see you back in about 6 weeks or so to see how things are going.
Information on things I've talked about in this entry:
New Dr.: Hi Nicole.. tell me about what is going on, your health history, your mom and dad's health history, your bf's health history, his families health history, how your daughter is doing and when you are going to have another child.
New Dr.: Alright let's start off with an ultrasound and go from there.
New Dr.: Okay so, your uterus looks good (SN: I've been told I have a text book looking uterus before - multiple times, by multiple doctors so this was not a surprise), your right ovary looks like it has 25 cysts in it and your left ovary has about 6 in it. So I can see why you are still having pain. You are still ovulating. You may just need to give the Mirena a little more time to kick in. Get dressed and we'll talk across the hall.
Me: PCOS?
New Dr.: your right looks a little Poly cystic but not enough to diagnose.
New Dr.: Have you ever heard of Lupron?
Me: I do not want to take Lupron
New Dr: Can I ask why?
Me: I'm a person who gets the side effects of medication, unfortunately and I've read about Lupron and it can have really bad side effects. I just feel like having all those side effects replacing the pain isn't a pro for me. Plus it's not a guarantee to get rid of the pain.
New Dr: I understand but we've seen it help a lot of patients before.
Me: It's just not something I want to take.
New Dr: Okay, I won't force it on you. Well, it looks like to me that we should try Letrozole along with your Mirena and see if that helps. It's helped in the past with your pain so I think that is a good route. I do not think surgery is the best idea right now.
Me: Why? Dr. Stovall thought it was a good idea and he said you all would do the surgery.
New Dr: I'm sorry he said that to you. He should not have promised you surgery. I just don't think that surgery is a good option now. Last time you only got 2 months of relief. I don't feel like that is enough time to have you go through surgery again. Especially not with a little one to take care of.
Me: But what if it's more this time? Last time I wasn't on any medication after surgery and this time I would be on two. I honestly think this time it will be better.
New Dr: I'm sorry I just don't feel like it's a good idea. Let's try the Letrozole and see if that helps.
Me: And if it doesn't?
New Dr: Other then the Lupron that's all the medication that we try for Endo. We can set you up with Pain Management and they can help control the pain.
Me: Isn't Pain Management just going to control medication? They aren't going to actually deal with what is causing me pain they are just trying to cover up the pain. I want to be cured I do not want to take more pills.
New Dr: Yes, as far as I know, they only deal with Medications. I'm also going to refer you to a Urologist. I think some thing else may be wrong. Endometriosis should not give you pain every day. It should only give you pain through your cycle. That leads me to believe that something else is wrong.
Me: Something else? *tears*
New Dr: I'm not taking away the Endo diagnoses. We know you have Endo but I think something else may be wrong, possibly Interstitial cystitis, which is something with the bladder. You've been to a doctor to look at your bowels, you've seen us for you uterus, the only other thing in that area is the bladder.
Me: So I'm getting referrals to a Urologist and Pain Management?
New Dr: Yes and I'll see you back in about 6 weeks or so to see how things are going.
-------
So I went from being told I was having surgery to not. Although this may seem like a good thing to some people, because after all why would someone want surgery? But it is not a good thing, it is a horrible thing actually. My goal was surgery. Surgery could help. Even if this time I only got 5 months of relief. I don't think the doctor understands that those 5 months are needed. I don't think she understands that ANY day with out pain is a miracle for me. When I step back from the situation I understand where she is coming from but I can't step back for long. I'm in pain. I'm in massive amounts of pain. I am in so much pain that I can't deal with daily tasks. I cannot live my life on pain killers. I can't function on pain killers and to be honest I don't want to be able to function on them. Being able to function on them means I'm taking too many and getting too use to it. I don't want to be dependent on any medication especially not a narcotic.
Yesterday I got the appointments with Pain Management and a Urologist. The Urologist is 2 weeks from today and the pain management is mid September. Everyone thinks going to the pain management is going to be great for me. I'm more skeptical. I feel like they are just going to handle medications so my doctors don't have to deal with it. I want to hope for the best but it's hard. So, this is what has been going on in my life lately. I'm sorry it's not well written, I'm sorry it's taken me a while to write it but I needed time to let things settle in my head. I still am trying to get past this all in my head. It makes me angry and upset. I'm disappointed and frustrated. I'll update more when I know more.
Information on things I've talked about in this entry:
Lupron:
LUPRON DEPOT® (leuprolide acetate for depot suspension) 3.75 mg and –3 Month 11.25 mg is used for the management of endometriosis, including pain relief and reduction of endometriotic lesions. LUPRON DEPOT with daily norethindrone acetate 5 mg is also indicated for initial management of endometriosis and for management of recurrence of symptoms. The recommended initial treatment is no more than 6 months. Repeat treatment for endometriosis should be limited to 6 months.
LUPRON DEPOT given with norethindrone acetate may lower your HDL-cholesterol level (the “good” cholesterol). You should not take norethindrone acetate with LUPRON DEPOT if you currently have or have previously had any clotting disorder, heart disease, stroke, liver disease or breast cancer. Tell your health care provider before beginning treatment with norethindrone acetate if you currently have or have previously had high cholesterol, migraines, epilepsy, depression, or smoke.
During treatment with LUPRON DEPOT and norethindrone acetate, immediately tell your doctor if you have a sudden loss of vision, double vision, or if migraine headaches occur. You should notify your doctor if you experience fluid retention, epilepsy, asthma or worsening of asthmatic symptoms, heart or kidney problems.
Thinning of the bones may occur during therapy with LUPRON DEPOT alone, which may not be completely reversible in some patients. Since some conditions may increase the possibility of bone thinning, you should tell your doctor if you smoke, use alcohol in excess, have a family history of osteoporosis (thinning of the bones with fractures), or are taking other medications that can cause thinning of the bones. You should be aware that repeat treatment with LUPRON DEPOT alone is not advisable if you have these conditions.
After beginning LUPRON DEPOT, your estrogen levels will increase for 1 or 2 weeks. During this time, you may notice an increase in your current symptoms. You should notify your doctor if you develop any new or worsened symptoms after beginning LUPRON DEPOT treatment.
LUPRON DEPOT is not a method of birth control. Even though you may not have periods, unprotected intercourse could result in pregnancy. You should use non-hormonal birth control such as condoms, a diaphragm with contraceptive jelly, or an IUD to prevent pregnancy. If you think you have become pregnant while on LUPRON DEPOT, talk to your doctor immediately.
There is a possibility of the development or worsening of depression and/or the occurrence of forgetfulness.
Patients who have a history of depression should be carefully observed during treatment.
The most common side effects of LUPRON DEPOT include hot flashes, vaginal dryness, headaches, changes in mood, decreased interest in sex, depression and/or the occurrence of forgetfulness.
LUPRON DEPOT must be administered in your doctor’s office.
This is the most important information to know about LUPRON DEPOT. For more information, talk with your health care provider.
During treatment with LUPRON DEPOT and norethindrone acetate, immediately tell your doctor if you have a sudden loss of vision, double vision, or if migraine headaches occur. You should notify your doctor if you experience fluid retention, epilepsy, asthma or worsening of asthmatic symptoms, heart or kidney problems.
Thinning of the bones may occur during therapy with LUPRON DEPOT alone, which may not be completely reversible in some patients. Since some conditions may increase the possibility of bone thinning, you should tell your doctor if you smoke, use alcohol in excess, have a family history of osteoporosis (thinning of the bones with fractures), or are taking other medications that can cause thinning of the bones. You should be aware that repeat treatment with LUPRON DEPOT alone is not advisable if you have these conditions.
After beginning LUPRON DEPOT, your estrogen levels will increase for 1 or 2 weeks. During this time, you may notice an increase in your current symptoms. You should notify your doctor if you develop any new or worsened symptoms after beginning LUPRON DEPOT treatment.
LUPRON DEPOT is not a method of birth control. Even though you may not have periods, unprotected intercourse could result in pregnancy. You should use non-hormonal birth control such as condoms, a diaphragm with contraceptive jelly, or an IUD to prevent pregnancy. If you think you have become pregnant while on LUPRON DEPOT, talk to your doctor immediately.
There is a possibility of the development or worsening of depression and/or the occurrence of forgetfulness.
Patients who have a history of depression should be carefully observed during treatment.
The most common side effects of LUPRON DEPOT include hot flashes, vaginal dryness, headaches, changes in mood, decreased interest in sex, depression and/or the occurrence of forgetfulness.
LUPRON DEPOT must be administered in your doctor’s office.
This is the most important information to know about LUPRON DEPOT. For more information, talk with your health care provider.
http://www.endofacts.com/
IC:
Interstitial cystitis (int-uhr-STISH-uhl siss-TYT-uhss) (IC), is a chronic pain condition that affects the bladder. Many experts now call it bladder pain syndrome (BPS). Symptoms of IC/BPS include:
IC/BPS can greatly affect a person's quality of life. Severe cases of IC/BPS can keep people from going to work or school and being socially active. It can affect a person's sex life and relationships. Living with a chronic condition can increase your risk of depression.
No one knows what causes IC/BPS. The following factors may play a role in IC/BPS:
http://www.womenshealth.gov/publications/our-publications/fact-sheet/interstitial-cystitis.cfm#a
- Pain or discomfort believed to be related to the bladder, which often gets worse as the bladder fills.
- Feeling like you need to urinate right away (urgency), often (frequency), or both. Most people urinate between 4 and 7 times a day. Yet with IC/BPS, the bladder may hold less urine. People with severe IC/BPS urinate as often as 30 times a day.
- Pain, pressure, or tenderness in the pelvic area and/or genitals.
- Pain during sexual intercourse, or pain during ejaculation for men.
- Ulcers and/or bleeding in the bladder.
IC/BPS can greatly affect a person's quality of life. Severe cases of IC/BPS can keep people from going to work or school and being socially active. It can affect a person's sex life and relationships. Living with a chronic condition can increase your risk of depression.
No one knows what causes IC/BPS. The following factors may play a role in IC/BPS:
- A defect in the bladder wall that allows substances in the urine to irritate the bladder.
- A specific type of cell that releases histamine (HISS-tuh-meen) (chemical released during an allergic reaction) and other chemicals, which lead to symptoms of IC/BPS.
- Something in the urine that damages the bladder.
- Changes in the nerves that carry bladder sensations, making normal events, such as bladder filling, painful.
- The body's immune system attacks the bladder.
http://www.womenshealth.gov/publications/our-publications/fact-sheet/interstitial-cystitis.cfm#a
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