endotwins q & a

Q&A By: Fela M'tima Dunfee

February-13-2017

 

 

Q: Should I try Lupron even if I'm not 100 percent sold on it but my doctor thinks it's my only option?

 

A: That's a position that I've personally been in and from my experience, I can say I am glad I never tried it and really do believe it's a personal choice. I feel as though many doctors suggest it because it CAN help some women. Now, on the other hand, most doctors do admit openly that the side effects are very intense and it is really up to you whether or not you feel it's worth giving a shot. I would explore other options if you are questioning it such as:
 

  1. Reach out to a different doctor for a second opinion, they might offer you advice/other options that you feel more comfortable with.
  2. Make sure you've explored other surgical options, have you tried excision surgery? It is the best surgery for Endometriosis and worth trying before hormone treatment. (And sometimes you can try a combo of both)
  3. Reach out to women who have tried Lupron and listen to their advice and what treatments they used if the Lupron was not effective for them.

 

Q: I've been spending a lot of time with a guy and feeling bad because of my sickness. How do I explain to him that I might not be getting better soon?

 

A: Relationships are beyond tricky when it comes to having a chronic illness. What I have learned through my own relationships, and the endo sisters around me, is that communication is extremely important. Endometriosis is a part of you and you can't ignore it (trust me, I've tried, that bitch is loud as hell).

 

Starting a new relationship with honesty will set the path of a good and healthy relationship. Think about it like this, if you were falling for someone and they told you they were sick, you would do whatever you could to support them. You should expect the same from your partner! It will also give you confidence and emotional relief to express your daily needs while having this disease. You got this girl!

 

Q: How do I get doctors to take me seriously? Many doctors dismiss my issues and won't even want to perform a surgery.

 

A: This tends to happen a lot and happened to me with my first obgyn that I saw! Looking back after multiple surgeries, she was SO wrong for dismissing me. Doctors need to take our pain seriously so on that note, you must find a different doctor! A doctor that understands Endometriosis and pelvic pain, wouldn't think twice before diagnosing you the proper way because they know it is the beginning of getting you the treatment you need. 

 

Q: What are symptoms of Adenomyosis? I suspect I have it but I've read that mostly older women get it.

 

A: I have read that too and it is BULLSHIT. I know handfuls and handfuls of women under the age of 30 who have Adenomyosis and as young as 21. Though you cannot confirm it without a surgery, here are the symptoms:

 

  • Heavy blood flow during periods
  • Periods that last longer than normal
  • Pain during sex
  • Chronic pelvic pain
  • Irregular periods

 

From my experience, I don't have every symptom but I struggled really bad with pain, both chronic and during sex, and heavy bleeding. I've had an IUD for over a year now and though I do still get pain, I do not bleed buckets anymore which has really saved my life. IUDs don't work for everyone but I do believe birth control can do wonders for certain Adenomyosis symptoms.

 

 


Q&A By: Autumn Smith

February-5-17

 

 

Q: Traveling always seems to result in a flare for me. I have lots of tips and tricks, but I'm always up for hearing more!

A: This is a tough one for all of us. Unfortunately a flare might be hard to prevent, but I think we can all become pros at managing it. Luckily, traveling is probably more rare than everything else you do in your life so it's okay to go a bit overboard when it comes to coping techniques. This is what I've learned to do while traveling:

* Pack every single medication that you might need, even the ones you never need. I know it's a pain to take up space in this way, but it's worth it. 
* Double, triple, quadruple check everything. You can not afford to leave your huge flare hoodie or nausea medicine behind. 
* Of course now might be the time to wear your cutest crop top, but be prepared for an endo belly. This might sound silly, but it makes a world of difference when you pack cute jackets and bombers to cover your belly if you flare. I tie them around my waist until I need them. The 90's are in.
* Take vitamins everyday, drink water, and eat well around the clock. These might be things you normally do, but when you're traveling, it's more important than ever.
* Disposable heating pads that stick to your skin MIGHT just save your life. You can find them at any pharmacy. I stick them on all my problem areas twice a day when I'm traveling!
* Schedule naps and rest time. MAKE IT MANDATORY. This is the number one most important thing for me while traveling. I know it might be a pain to stop what you're doing and go back to your hotel, but in this case you might not have a choice. Your friends and family will have to understand. A nap / rest period in the middle of the day can help you tremendously. If not, you could end up in bed missing out for even longer.
* Okay, this one might be just as important: TAKE MEDS AROUND THE CLOCK. For example, last time I was on vacation I was waiting for surgery and horribly flared. My pain was out of control. None of us should take painkillers around the clock everyday, but when you need to move excessive amounts for a few days on vacation, it's important. When I had terrible pain, I would stay on top of it and take prescription painkillers every four to six hours. Don't wait for the pain to kick back in. I took anti-inflammatories every eight hours as well, and medical marijuana edibles to help me walk easily. Zofran for nausea was just as important to take everyday too. You know your body, never take too much of anything - only the prescribed amount. 
* When you're resting at your hotel day or night, heat and ice as much as you can.
* If you use it, caffeine! I usually like to keep my caffeine intake low, but now is not the time to be a hero.
* When I know I'm going to travel, I always have my doctor prescribe me extra progesterone. Normally it's just one pill a day, and it's enough to keep you from break through bleeding that would normally leave you bedridden.
* Start a regimen of fiber pills or fiber gummies (whatever you like) a few days before vacation. Sometimes when you're already prone to constipation from endometriosis, it's easier to become completely backed up on vacation. Constipation can make pain so much worse, so bring laxatives or stool softeners just in case. 
* DO ALL OF THESE THINGS. Okay, you don't have to...but do every single thing that works for you. It's never just one thing that helps, I find in almost all situations it's a combination of different treatments working together that really solve my problems. 

 

Q: Should I feel guilty for saying I have endometriosis? I feel bad saying it because my cramps are not as insanely painful as other women I know. My problems are mostly with sex and hormones. I just have a hard time allowing myself to be upset.

A: Quick answer: NOoOoO! Never, ever feel bad. To get deeper into this subject, maybe take a moment to think of it this way: every human should feel sympathy for any other human suffering in any way. What you're experiencing is not the norm for most humans. No one should have to feel pain during sex, and no one should have to deal with the symptoms associated with wonky hormones. If you had a cold, you would treat it, and most people would complain about it on Facebook. Your suffering is worse than a cold. Just the fact that you're asking this question shows me that you are very aware and sympathetic to the women who have higher stages and worse endometriosis than you do, and I know they appreciate that. 


Q: I know you're not a medical professional but I value your opinion and hope that maybe you can give some insight. I was diagnosed with endometriosis at the age of 18 in 2015 via a laparoscopy. They said I had endometriosis adhesions on my fallopian tubes and confirmed it in the lab. Every doctor's appointment since, my gynecologist tells me something different. Right now, she's telling me that endometriosis doesn't grow back on anyone. I'm on birth control for the hormones. I was just wondering if you guys could tell me if endometriosis grows back? Is she telling the truth? I'm so confused. I don't know if I should see a different doctor!

A: Unfortunately I'm not a doctor, but I have learned about this subject quite a bit and I can tell you what I know. First let me say this: yes, you should find a new doctor. This is the number one thing I tell women with endometriosis constantly. It might sound harsh, but if you still have pain and you see no improvement, things are getting worse, nothing has helped your symptoms, or, most importantly, they don't listen to you or give you enough information on your disease, you need to find a new doctor. Look until you find one that makes you comfortable, helps your symptoms, and explains things enough that you know everything about what's going on in your body. Most women keep searching until they find one that they are quite literally in *love* with. I want that for you!

Now back to your question. From what I understand and know from experience, endometriosis can absolutely grow back. Now, I don't think your doctor was lying, and I do understand what she might have been referring to. 
I don't know what kind of surgery you had, but there are two main types of surgeries for removing endometriosis and they are very different. One is done with a laser, and it can be very temporary. I have had eight, one every three months. Every three months when he opens me up and checks my organs he finds up to 200 more lesions on the same organs every time, and he removes them. They keep growing back. 
The other kind of surgery is excision surgery, they excise ("cut," for lack of a better word) out the endometriosis from your organs. Endometriosis can NOT grow back in the place that they excised it from. Most women feel much better after having one excision surgery. But you need to think about it this way: let's say 25% of your bladder is covered in endometriosis and they remove it during excision surgery. It can't grow back on that 25%, but that leaves 75% of your bladder that it can grow back on. I had excision surgery two years ago and had relief, but I am currently full of endometriosis on other spots where it was not removed.
You're on the right track with hormonal birth control, if you're on a lot of progesterone it can slow the growth tremendously. If you're on hormones like that after excision surgery, you have a great chance of preventing the endometriosis from taking over your organs again.