Endometriosis

I'm just a normal, 30-something woman except that I have a horrifying disease called endometriosis. I've been searching for a place to share my story and gather information so that's what this is - a place to discuss this disorder among friends. Have a question/comment? Send it to [email protected] - I'd love to hear from you!

[endometriosis]

Hello

Hi everyone!  It’s been so long since I’ve written here.  I recently had a new baby and as much as I want to be here all the time, my time is spent with my kiddos.  I’m going to try to do better about checking in as we find a new normal. 

My endo pain is back in full force since being pregnant (side note: don’t ever let anyone tell you pregnancy is a cure - it’s not).  It’s interesting to me that it’s also endo awareness month.  I feel compelled to shout about this disease from the rooftops.  It’s such a hard thing to live with and more doctors and specialists are needed.  Especially ones that are educated in the treatment of it.  Is anyone out there doing anything special for endo awareness month?  I’m working on a screening of the documentary Endo What?  Luckily in Canada, our Endo March is in May.  I’m interested to see what will be happening this weekend!

Please keep your messages coming.  I am not the best at responding but I do promise that I eventually will.  I love connecting with you all!

[endometriosis]

Hi , it's been nearly 2 years since my lap and my pain has just gotten worse. In the U.K. All they recommend paracetamol or ibuprofen. (Which really don't help) i was just wondering what you recommend/use when you are in pain?

Hi Anon,

Everyone deals with their pain differently.  For me, I find a heating pad works and I have found a lot of relief with castor oil packs and using essential oils.  Those are the things I have tried for immediate relief.  I have also used the endo diet to control symptoms and found some great progress using pelvic floor physiotherapy.  Those types of things help to hopefully lessen the flares.

Hope that helps you too!

[youngchronicpain]

why are so many people more horrified by the fact that I have to take multiple medications daily than by the fact that I am in severe chronic pain every day? 

[endometriosis]

Yes! This!!

[endometriosis]

My Story: The Damage Done

I find myself constantly wondering about the damage endo has done to my body.  I don’t just mean the physical part where the tissue was and then burned off leaving a permanent reminder of it’s presence.  Or even where it may be now just hanging out and growing by the day.  For me, I can also tell there has been damage to my mind.  I often wonder if the anxiety that I have and has only gotten worse as years go by is somehow connected to this too. 

I can remember when I started to feel like I was losing my mind.  I had just seen my 4th internal medicine specialist.  He was baffled.  He told me my symptoms made no sense with anything that he could diagnose.  I remember my mom putting me in her car and me staring out the window wondering if this was what a psychotic break really looked like.  Maybe I was losing my mind.  Maybe nothing was as it seemed.  Maybe all of this pain had been fabricated in my mind to make sense of something else.

Luckily, my parents were adamant about finding an answer and eventually I did get officially diagnosed with endometriosis.  Something physical was there for a specialist to see but I kind of also feel like the damage was already done.  I don’t trust my body anymore.  I ignore pains because for so long I was told it was nothing or that I was making it up.  I am incapacitated at times because I can’t make myself want to continue to push through this life where there is nothing but darkness ahead.  I have anxiety that I have somehow passed this to my daughter and just might pass it to another one (if this baby is a girl too). 

So. Much. Anxiety.  

It’s only recently that I have started to wonder if this is just another piece of the damage done to me by this disease.

Anyone else deal with anxiety? What do you do to cope?

[endometriosis]

Hi. I'm 17 and I think i might have endometriosis. My cramps get so bad that i cant get out of bed and can barely even move my head. I whimper a lot and try not to scream bc the pain is so bad. I take 6 midol but the pain still doesn't go away and -

Hi Anon,

I think there may have been more to your message that I didn’t get but will try to answer anyway.  Your symptoms could be related to endometriosis.  I definitely would have days like that, where moving just wasn’t an option.  Try a heating pad on your abdomen - I always found that soothing.  I also like to use castor oil packs to help relieve the pain more naturally (you can check out some good info and how to use them here).  You can also try acupuncture, the endo diet, massage therapy or pelvic floor physiotherapy to help alleviate some of your symptoms.  Hopefully you can get access to a gynecologist who can diagnose you and prescribe you additional pain management medication if that is an option for you.  Feel better soon!

[endometriosis]

I constantly feel like i have to go to throw up and go to the bathroom. I always shake really badly. Does that sound like endometriosis? I'm afraid bc i don't think my mom would take me to the doctor bc she wouldn't believe something was wrong.

Hi Anon,

It’s hard to say whether those symptoms could be related to endo or not since the disease presents differently in every person.  I definitely think you should get your symptoms checked out regardless - sounds like your body is trying to tell you something.  For reference, here are some of the more common symptoms of endometriosis (remember, this is not an exhaustive list and you can have none of these and still have endo):

What Are the Symptoms of Endometriosis?

Many times, endometriosis has no symptoms. When symptoms are present, they may include:

Abdominal cramps or back pain during menstruation.

Very painful menstrual cramps.

Painful bowel movements.

Painful urination, especially during menstruation.

Abnormal or heavy bleeding during periods.

Painful sex.

Difficulty becoming pregnant.

[endometriosis]

So I was on treatment for endo for a year. Basically stopping my period. Now I get shorter periods, but very intense ones. Is it possible for my endo to come back?

Hi Anon,

I think the key thing for us all to remember is that there is no CURE for endo.  There are lots of ways you can try to lesson the symptoms, but at no time will these 100% get rid of your endo and keep it from ever coming back.  That being said, yes, it is possible for your endo symptoms to return or become more intense as your body reacts to the different treatments.  Definitely something to discuss with your medical professionals.

Hope that helps!-A

[endometriosis]

Responding

So apparently Tumblr has been hiding all these questions you guys have been sending.  I’m so disappointed in the app on my Android but even when I logged in on my laptop, nothing showed.... until today!  Does anyone else have this problem?  Get ready for a bunch of responses coming your way!

[endometriosis]

My Story:  Hello?

So I have been pretty silent around here.  Lots has been going on in my personal life and I just haven’t felt the need to be public about it.  I guess I also just feel like maybe people aren’t really reading blogs anymore?  It seems that more and more people I used to follow have changed to Instagram and Snapchat and the stories aren’t getting told like they used to.  Is anyone still reading here?

For the people who are, I have big news (possible trigger warning)....

I’m pregnant!  We are so thrilled and excited to welcome a new baby into our family and even more thrilled that this time, it didn’t take long at all.  To me that means that the endo that was previously blocking my tubes hasn’t reformed there (or at least not as severely).  This pregnancy has been full of complications (which is why I have been so silent) so I am taking it day by day and thanking someone up there for watching over me and this baby.  I feel incredibly blessed.

My goal is to continue to write more as long as there are people who want to read.  Hope you are all well too!

[endometriosis]

Check out my story today on Hormones Matter. I'd love to hear your thoughts!!

[endometriosis]

My Story: Redundant

Hi everyone.  I know I have been off the grid.  I’ve been dealing with a lot in my personal life - some good, some challenging - and this blog has taken the back seat.  I know I keep apologizing and promising to be back better than ever but I don’t know if that is entirely realistic.  Posting daily is a challenge for me so I can’t promise that.  I do want to share the things I find and my personal story which is what I think most of you are here for anyway (please correct me if I am wrong).  I’m so lucky to have found this community which has introduced me to some amazing people and really helped in my own journey.  Each of you is a part of that and I am thankful for each of you.

So, wondering what I have been up to?  In December I quit my job after working there for over 9 years.  I went to another company doing something completely different but the job has given me the opportunity to have less stress in my life and work less hours which is something I think has had a positive impact on my endometriosis.  It did come with some additional stressors - for example, I lost my benefits for 5 months.  I’m about 2 weeks from getting those back so I will be very grateful to start treatments like pelvic floor physiotherapy again.

I have been working hard to get more momentum in my local support group that I started.  The ball is rolling a bit faster now and it is nice to connect with more women in my area who are fighting the same fight.  It’s pretty amazing to connect with women you didn’t even realize you needed in your life.  I’m grateful for each of them.

To continue raising awareness, I also volunteered to co-captain a local event for the Canadian EndoMarch on May 7.  It’s been a ton of work but I’m really getting excited to spread more awareness and educate more people on this disease and the amazing support group that’s available.

It’s never a dull moment in my life and, again, I’m so thankful that you are still here reading this.  Please let me know what features you would hate to see go away - maybe you love Tasty Tuesday or Meet A Friend Monday.  I will do my best to keep what you all love.  Also, please continue to reach out to me with questions.  I hope I have answered everyone that had asked me something in my absence.  I love connecting with you individually and do my best to keep any questions confidential (unless you ask anonymously and I can’t).  Here we go again!

[endometriosis]

Just wanted to say thank you for writing this blog! I'm almost 18 and have been in a lot of pain for about 6 months, following a ruptured ovarian cyst. After reading both this blog, and a few others like it, I think I'll ask my doctor about the possibility of endometriosis. I had a really bad day today (nothing like severe stabbing ovarian pain during an important exam), but your blog has really made me relax and think clearly, so I just wanted to drop by and thank you!

Hi Anon!  Thank you so much for this note.  It means so much to me that this blog helps even 1 person and I’m so glad you found something valuable here.  Best wishes on your journey!  I hope you reach out again!

[endometriosis]

So I'm 13 and I'm beginning to think I have endometriosis. I have all of the symptoms of it, but I just don't know how to bring it up with my mom so she can take me to get checked/tested. What do I do?

HI Anon - sorry for the delayed response.  I think the best way to approach it is to just have an open conversation with your mom.  Let her know what you have been experiencing - the good, bad and ugly - so she can get a complete picture.  Let her know you have been doing some research and what you would like to see happen next.  I think she will appreciate your honesty and the fact that you have been searching answers shows that it is important to you.  I would also let he know that while you think you might have this, it can only be 100% confirmed through a surgical procedure called a laproscopy and that you will need a specialist to perform that surgery and to receive treatment.  Hopefully that will help her to understand.  I wish you the best of luck!  Please let me know how it goes and if you have more questions or want to talk!  Either here or at [email protected].

[endometriosis]

hi im 16 and I just had my first surgery for endo yesterday I was wondering how long it takes to recover from the surgery & if you know anything that quickens recovery time? Also so far this year I have missed about 43% of my school year and everyone at my school is awful when dealing with me & treats me as if im purposely missing school/over reacting/have a low pain tolerance/doing it for attention do you have advice on how to handle it because they are basically refusing to accommodate me?

Hi Anon - sorry for the delayed response.  I’m guessing that you have recovered from your surgery since I’m not sure when you originally wrote but I will answer your question anyway.  I took about 10 days to heal from my surgery.  Apparently this was longer than most people but I was in significant pain and that’s how long it took for my body.  Everyone is different so I hope you took the time necessary to allow your body to heal.I’m sorry that things are difficult for you at school.  Having a chronic, invisible illness is definitely something hard to deal with.  The fact that people can’t see what’s wrong with you makes it more difficult for them to understand.  I would encourage you to get doctors notes where applicable  and see if there are any support groups/educational groups in your area that may be able to provide you with more information that could be given to your school to help them understand what you are dealing with.  I certainly hope that your surgery has helped with your pain!

[endometriosis]

For your endometriosis, did you have extremely painful ultrasounds? Because I was I had them and since I'm extremely squirmish about them. :(

Hi Anon. I thought I answered this but it's still in my inbox so I will answer again. Yes, I find my ultrasounds to be painful usually. Sometimes I think that this is because they are really digging around trying to find something so I'm not sure I can blame it entirely on the endo. Just try to relax as best you can. I find daydreaming really helps and if you get a tech who is willing to have a random conversation with you, I find that helps as well. Good luck!

[endometriosis]

I saw in another question that you said you had endo removed from your bowl & I was wondering if you had any rectal bleeding before you had it removed.

Hi! Yes, I did. Only during my period though which was interesting. It hasn't been nearly as bad since having it removed from that spot. Remember that everyone's symptoms are different so you may have bleeding but no endo there. Good luck!

[endometriosis]

Hi there, I have a question for you. How can I help my SO with her endo pain? I see her hit these downward spirals and I was wondering if you had any tips that could help at least dull the pain. Any guidance is appreciated. Thank you.

Hello! Thanks so much for writing. I think it's amazing that you want to help your significant other. I know, for me, little things are helpful. Like taking our daughter and letting me know I can rest. Sometimes the only that makes me feel better is sleep either because of my medications or because of the pain. I think making sure she is getting the rest she needs is important. Also things like running her a bath, getting her heating pad, making sure she takes her medications, making her a snack are also helpful. My most favourite things are just when my husband will cuddle up with me and put his hand on the area of the most pain. The heat helps relax my muscles and having some comfort is essential too. I also am thankful for the times that he just holds me while I cry and let's me get it out emotionally. It's also helpful if you can be at her important appointments. It's helpful to have an advicate and someone who can validate her claims and also listen to the doctor. I know sometimes the doctors are delivering news that makes it hard for me to concentrate on what they are saying or options they are giving me so having someone there is helpful for that. Also, I've been given devastating news at appointments and it would have been nice to have a shoulder to cry on or someone to drive me home. My best piece of advice is to always believe her. We spend a lot of time trying to convince people we are sick and I am so thankful that my husband never thinks I am faking or exaggerating. He knows I hide a lot of pain and so when I am expressing it, it's really bad. Just being there and listening is a gift in itself. Anyone else have some advice?