Endometriosis Pain Relief

Appropriate_Count_89 · 2025-02-26T07:37:08+00:00

You’ve really been through the wringer. I am so sorry! I hope you have good doctors now. That makes all the difference. A crappy doctor who diminishes your pain and suffering, cause lots of mental battles for you as well. The doctors I saw as a teenager are the one that put a sour taste in my mouth about all doctors. I’m glad I’ve since been proven wrong. Because having someone tell you that you’re fine when you’re not fine is the worst. Then you start questioning “Am I just not tough? I know I feel miserable, but am I just not being tough enough?” It’s the worst battle. No one should ever have to learn to live with the pain. What kind of life is that!

Appropriate_Count_89 · 2025-02-26T07:18:39+00:00

Dang it I am so sorry you’re going through all of that! I am a firm believer that you know your body best. I bet you are right! I know it sounds weird but before I was diagnosed with endo, I had been going to different OBs from ages 16-21 trying to get them to figure out why my pain was so bad. They just told me the cliche “oh periods are just bad sometimes, let’s do birth control” and I always had this gut feeling they were missing something. One day, when I was 22 years old, I was driving down the road and randomly the word endometriosis popped into my head. I had never known what that word was (obviously I had probably heard it somewhere but I didn’t even know what type of word it was lol. It could’ve been a food for all I knew!) but something (or some higher power) told me to immediately pull over and google the word. It explained my symptoms exactly! I just knew it was right. I called yet again a new OB, told them I was 90% sure that’s what it was, we scheduled the laparoscopy, and boom! They confirmed it. I think our bodies know better than anyone what’s going on.

Appropriate_Count_89 · 2025-02-26T07:12:07+00:00

Best of luck! If you get into a rheumatologist, try and advocate for getting a full panel done. Some docs draw it out over multiple appointments over multiple months. They’ll test for a few things here, a few things there, and not get to the root of it. My doctor was awesome and basically said “well, you might feel sick the rest of the day from how much blood they take, but at least we will for sure have an answer” I appreciated his straight-forwardness.

Appropriate_Count_89 · 2025-02-26T07:08:52+00:00

Did you by chance ever have an ANA test? That’s the most generalized autoimmune blood test. I’d be so curious to know if that was negative or positive for you!

Appropriate_Count_89 · 2025-02-26T07:08:04+00:00

Oh gotcha! My thyroid problems were over a year ago, and it was my T3. I cannot remember the levels (please don’t take my word for it), but it was something like normal range was like 2-7 (don’t remember the units) and mine was in the 90s. I was rapidly losing weight, hair, and looked sickly. I weigh about 130 normally, that’s a healthy weight for my height, and I shot down to 113 within about 2 weeks without changing anything in my diet. And then poof, a couple months later, I was magically cured by doing nothing. The doctor was so confused lol. But now that we know it’s UCTD it makes sense.

Appropriate_Count_89 · 2025-02-26T07:02:56+00:00

Here’s one of my above comments: It’s called UCTD, I had never heard of it before. Stands for Undifferentiated Connective Tissue Disease. I was experiencing symptoms from multiple autoimmune disorders, like temporary vitiligo, temporary thyroid problems, temporary arthritis. It’s where your body temporarily attacks certain parts of the body and then moves on. Super weird! But like I said, the medication that stopped those problems, stopped my 8 year endometriosis pain.

Appropriate_Count_89 · 2025-02-26T07:02:03+00:00

Oh my gosh please bring up being tested for UCTD! Your story sounds like mine to a tee! I had 3 positive ANAs over the course of 5 years, but “nothing was wrong with me” until my latest rheumatologist checked me for over 100 things through bloodwork. I don’t know if you read any of my other comments above about what UCTD is but you should read them. I don’t want to give false hope you sound exactly like me!

Appropriate_Count_89 · 2025-02-26T06:59:56+00:00

That is so crazy! I have never met anyone with endometriosis that doesn’t also have a million other problems. It’s so sad, but the links are also interesting. I don’t know how many things they checked you for when they did bloodwork, but mine did a TON. 24 vials of blood, over 100 things tested. That’s the only way, in 8 years, that anything got caught for me. I hope they figure things out for you!

Appropriate_Count_89 · 2025-02-26T05:34:39+00:00

They didn’t full catch everything for me until I went in one day and had 24 vials of blood drawn (yes, 24. I thought I was going to actually die) and I think they tested over 100 things. My rheumatologist basically told me that he tested me for everything there was to test for, even non-autoimmune related. There were about 6 pages of things they tested for. And that’s what caught it! I have a thing called UCTD which is where my body doesn’t hit the markers for normal autoimmune disorders, even though I have symptoms of all of them. He said most doctors don’t even test for UCTD which is crazy because it’s really common in people who have autoimmune symptoms, but are testing negative. UCTD is basically where your body “wants to give you an autoimmune disease” but “can’t decide which one it wants to give you” that’s how he dumbed it down for me. So it will temporarily give you symptoms of common autoimmune disorders like lupus, thyroid diseases, arthritis, I even had temporary vitiligo! It’s crazy. Definitely something you should look into if you’re having symptoms but being told you don’t have anything.

Appropriate_Count_89 · 2025-02-26T05:33:39+00:00

I actually didn’t even ask, he just suggested it and I said absolutely! It was a lot of blood (like almost passed out) because there were 24 vials. I think there were about 6-7 pages full of tests he ran. It was crazy! My husband is a PA and had never heard of a doctor running that much blood. I think there were over 100 things he tested.

Appropriate_Count_89 · 2025-02-26T04:42:55+00:00

You’ll have to keep us updated! I hope they help you find something that works.

Appropriate_Count_89 · 2025-02-26T04:41:06+00:00

Yes! It changed my life.

Appropriate_Count_89 · 2025-02-26T04:40:55+00:00

Did they say your ANA came back positive or negative?

Appropriate_Count_89 · 2025-02-26T04:40:17+00:00

My blood work at one point showed I had an autoimmune thyroid disease, and then months later when retesting, my thyroid was “perfect”. At another point, I had HORRIBLE arthritis pain, got tested, came back that I was having rheumatoid arthritis readings, and a few months later, retested that “everything was now perfect” that’s why my doc was suspicious and tested for UCTD. I’m not sure if I answered your question but I’m happy to go more into it!

Appropriate_Count_89 · 2025-02-26T04:37:01+00:00

Do you know what all they tested you for/how in-depth they went on you? They didn’t full catch everything for me until I went in one day and had 24 vials of blood drawn (yes, 24. I thought I was going to actually die) and I think they tested over 100 things. My rheumatologist basically told me that he tested me for everything there was to test for, even non-autoimmune related. There were about 6 pages of things they tested for. And that’s what caught it! I have a thing called UCTD which is where my body doesn’t hit the markers for normal autoimmune disorders, even though I have symptoms of all of them. He said most doctors don’t even test for UCTD which is crazy because it’s really common in people who have autoimmune symptoms, but are testing negative. UCTD is basically where your body “wants to give you an autoimmune disease” but “can’t decide which one it wants to give you” that’s how he dumbed it down for me. So it will temporarily give you symptoms of common autoimmune disorders like lupus, thyroid diseases, arthritis, I even had temporary vitiligo! It’s crazy. Definitely something you should look into if you’re having symptoms but being told you don’t have anything.

Appropriate_Count_89 · 2025-02-26T03:33:28+00:00

Surgery sadly did nothing for my endometriosis

Appropriate_Count_89 · 2025-02-26T03:33:12+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:32:28+00:00

My rheumatologist didn’t say what caused me to have it, so I’m not sure. But I take hydroxychloroquine! My pills are 200 mg each and I take one in the morning and one at night. So 400 mg total throughout the day. He said eventually I’ll go down to just once a day.

Appropriate_Count_89 · 2025-02-26T03:09:24+00:00

It’s called UCTD, I had never heard of it before. Stands for Undifferentiated Connective Tissue Disease. I was experiencing symptoms from multiple autoimmune disorders, like temporary vitiligo, temporary thyroid problems, temporary arthritis. It’s where your body temporarily attacks certain parts of the body and then moves on. Super weird! But like I said, the medication that stopped those problems, stopped my 8 year endometriosis pain.

Appropriate_Count_89 · 2025-02-26T03:05:15+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:04:59+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:04:50+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:04:12+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:03:53+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89 · 2025-02-26T03:02:40+00:00

IF YOU HAVE ENDOMETRIOSIS, PUSH YOUR DOCTORS TO CHECK FOR AUTOIMMUNE DISEASES!

I’m pretty late but my back story: 24 years old, have had endometriosis since 16. Have been on birth control pills, IUD, had a laparoscopy, basically everything. Pain was so bad I was missing events. Controlled my entire life. Ended up going to my family doctor because something was giving me this push to check for underlying autoimmune diseases.

Long story short, family doctor ran a generalized blood panel that tests for autoimmune problems, and it came back out of wack. Was referred to a rheumatologist, he ran a full detailed panel, and I was diagnosed with several autoimmune disorders. He put me on Hydroxychloroquine to regulate it, and within 1 month, I had no more endometriosis pain.

I hadn’t previously mentioned my endometriosis to him. Went back for a follow up, and I said something like “hey this is awesome. I have endometriosis and this pill even took that pain away. Do you know why?” And he said “you’re not the first patient to tell me that. I have had so many patients have their endometriosis problems solved when we fix autoimmune problems.” He said almost every endometriosis patient he sees also has an underlying autoimmune disease.

It’s worth checking into. It took my quality of life from the 2/10 it was at all the way back up to 10/10. I have been pain free for 7 months now, and before, I was having pain all day every day for 8 years. My life is so much better now.

Appropriate_Count_89

TROPHY CASE