Mal Has Endometriosis (Day 4356 - 10/28/21)

Previous Vlog (Day 4355) | Update on Mal’s surgery

Today, Stephen and Mallory are talking about a medical issue that they have withheld from the vlog for a long time. They didn't want to reveal it until everything was set, but it ended up taking a year and a half to completely resolve everything. The patrons on Patreon have known about this situation for a while now. They also didn't want to talk about this issue on the vlog sooner because it's overwhelming to get advice from so many people even though they mean well. It was more helpful for them to share bits of information with the patrons and get advice from a smaller group of people.

Mal has endometriosis. She was first told by a college campus doctor that she had it. Mal explains that endometriosis is when tissue similar to tissues that normally form in the uterus form elsewhere. Mal then talks about how her first experience with endometriosis was when she fainted on campus due to pain during the day of her senior year art review. Mal says that a professor found her after she fainted and gave her Ibuprofen. Afterwards, she just told the professor that it was probably just cramps and that she was fine. Mal then rested in her car for a few hours before returning to her dorm. She felt bruised inside for days after that though, so she ended up going to the campus health clinic. The doctor told her that it's probably endometriosis and she was given some birth control. Mal explains that birth control was a very common "treatment" for endometriosis since it minimizes the fluctuations in hormones.

However, after a couple years it didn't seem to help anymore. In between those years, Mal also had issues with her bladder and bowels. Mal says that she basically got every medical issue that people with endometriosis can get. Mal says that she was repeatedly told by doctors that it's just a bad period and that a lot of women are told that instead of being taken seriously. Stephen says that their hope for this video is that someone learns something from it. They hope that the information that Mal has learned firsthand just living her life and being in extreme pain will help someone. Mal had been studying on and off about endometriosis. After reading a comic about someone's experience with endometriosis on The Lily, she realized that all symptoms except for 3 of them listed in that comic matched her own symptoms.

Stephen doesn't have any problems with sharing his own medical issues. But, he tries to respect the privacy of everyone around him whether that be Mal, his parents, or his friends. So, he generally don't talk about it on the vlog if someone has a medical condition. Stephen says that sometimes he doesn't even talk about the things he's going through until he gets to a point where he's comfortable talking about it.

Then, he talks about how Mal has had very extreme pains as well as regular day-to-day pain throughout the past few years. There have been times where that pain spiked in terrifying ways. Two of the scariest moments happened when they were still living in the old house with the blue wall. Mal was on the floor of the bathroom in extreme pain. It was so painful that she thought that her appendix might've exploded or something and it even hurt to breathe. At the time, they had both had a dilemma about whether to go to the ER or not. Stephen explains that going to the hospital is associated with expensive bills due to the U.S. health care system, so you really have to weigh whether you really need to go or not. They ultimately decided to just let Mal take a bunch of Ibuprofen and wait an hour to see what happens and it started to calm down after a while. However, Mal felt bruised inside for days like she did in college.

Today, they are finally talking about Mal's endometriosis since they are getting to the end of the journey of Mal getting surgery. In January 2020, Mal saw a gynecologist because she was in a lot of pain on her right side. An ultrasound revealed that Mal had some cysts the size of a pinhead, so she was told that they would keep on eye on them. The gynecologist said that it could be some nodules or endometriosis. But, that surgery wasn't worth it for only a single one and they wouldn't know unless they go in for surgery. The gynecologist was also thinking about prescribing Mal a 2nd birth control which means that Mal would be on 2 birth controls at the same time. Taking 2 birth controls and waiting to see what happens seemed insane to Mal, so she decided to get a 2nd opinion from another doctor. The 2nd doctor told her she probably had endometriosis which Mal had suspected she's had since college. Then, Mal decided to do some resarch on a website that gathered lots of information from doctors and had a bunch of medical journals. She learned a lot about how her other symptoms could be related to endometriosis, theories about why it is, how it happens, and the best standard of treatment. In June 2020, she found a surgeon that she really wanted to do her surgery and sent out all her records. Mal says that it was January when the 1st doctor brushed her off and it was in September 2020 when the surgeon contacted her. He told her that it was defintely endometriosis and that he could help her. So, he asked her to send him ultrasounds, records from her local doctor, and her personal medical history.

Stephen says that they are trying to retell the story as accurately and in-order as possible, but it's been a long journey. Mal talks about how there are 2 surgical methods for treating endometriosis. One is ablation and the other is excision. Mal compares ablation to picking a dandelion and leaving the roots still in the ground. The roots remain so the dandelion can grow back. Endometriosis is similar in that it will grow back. Ablation only burns off the surface level of the uterus, so there's still endometrial tissue that could be implanted deeper in the uterus. Excision removes all of the endometrial tissue like removing an entire dandelion including it's root. Mal says that a lot of women do get relief with ablation, but some types of endometriosis are more aggressive and will come back. In a lot of cases, endometriosis does end up coming back which results in more surgeries and scar tissue. Therefore, Mal knew that she wanted an excision.

She wanted to find a surgeon that only did excision since some surgeons do ablation on the harder parts and excision on the easier parts. She also wanted to find someone she could trust to do it. Mal used a research website called Nancy's Nook. She recommends it with hesitation because it's just a library full of information on endometriosis that you can read. It's not a place to ask questions or for advice about endometriosis. The surgeon Mal ended up choosing is one of the top people in his field. There are a lot of local doctors who can do endometriosis surgery, but none of them specialize in it like Mal's chosen surgeon. A lot of the local doctors do ablation, so there's a possibility that the patient would've had to come in for a 2nd surgery. Therefore, there was a high chance that the endometriosis could come back and the patient would've had to come back in again. The resulting scar tissue from the 1st surgery would also make finding the endometrial tissue during the 2nd surgery harder. If it's a patient's 1st surgery and they choose a good surgeon who does excision, then they could just get 1 surgery and not get any scar tissue.

Mal talks about how students in medical schools are taught that endometriosis looks a certain way, but it can actually come in different colors and forms. So, sometimes it takes a specialist to be able recognize those other forms and get as much removed as possible. The endometriosis field is an ever-evolving field and there's still not enough information about it even at this point. So, having a specialist for it is a big deal. It's the 1st time that Mal has ever had a specialist tell her that she had endometriosis. The surgeon also told her to look up her family medical history. Mal called her dad, but he didn't know anything related to his sister's or mother's medical issues. So, Mal called her grandma on her dad's side, who told her that one her aunts has endometriosis. Mal then called her aunt and all of Mal's aunts on her dad's side have it. Next, she called her mom and was told that her mother's sister has it. Therefore, family members from both sides of her family have it.

Stephen says that they had tried to schedule a surgery a year ago, but a battle with the American health care system ended up happening. Stephen talks about how the surgeon that Mal chose knows what he's doing, can help her, and firmly believes that she just needs 1 excision surgery since she hasn't had a prior surgery. Mal read many reviews from patients about this doctor that described how great the doctor is, his great bedside manner, and how patients feel better after the surgery. They needed to schedule to the surgery so they had to talk to insurance. But, COVID spiked last winter and it delayed their insurance stuff until spring 2021. In spring, Mal started talking to insurance and getting letters from her local family doctor and local gynecologist. Mal had gone back to the gynecologist to explain the situation to her. It was kind of an awkward appointment since Mal had essentially gone to another doctor for a 2nd opinion and was told that she had endometriosis after this gynecologist brushed her off. Stephen mentioned that there was a vlog where they went to the doctor's office, but they never talked about what happened so a lot of people were asking about it.

Then, Mal talks about how the surgeon told her that endometriosis has stages based on severity like how cancer has different stages. Mal is in stage 3 or 4 and the highest stage is 4+ (there is no stage 5). The endometriosis is really affecting Mal's quality of life and every passing month things are getting worse. One of the reasons Mal chose to schedule the surgery now is because her Mirena birth control is expiring soon. It only lasts for 5 years and Mal was getting to the end of those 5 years. She also needed to get it removed anyway since it supresses hormones and her endometriosis needs to be as flared up and visible as possible for the surgery. That is why she went to the gynecologist to get it removed and to get a letter written for insurance. The gynecologist was excited that Mal was going to get the help she needed. She wrote a letter of recommendation since they told the her that they were trying to send an appeal to insurance.

In February 2021, Mal was feeling miserable and there were days where couldn't even get out of bed. They both knew that insurance wouldn't be thrilled that the surgeon Mal chose wasn't in-state and would probably deny coverage. Mal tried reading the insurance handbook to figure out a way to get insurance to cover the surgery. The handbook explained how to request an appeal, so Mal wrote a letter and sent it to insurance. She was told that the insurance provider is the one who should deal with this. Mal contradicted that by quoting the exact words from the insurance handbook and the customer service person was like "ugh". They then turned Mal over to a case manager who called Mal's local doctor and asked them to write a letter.

Stephen interjects to say that the scope of what they were trying to achieve changed over the course of this endeavor. Their starting goal was to get everything covered by insurance which they thought would just be a simple and easy process. The surgeon had told Mal that this kind of surgery typically doesn't get covered by insurance. But, they both at least assumed that the hospital visit would be covered since Blue Cross has a partnership with that hospital. Georgia Blue Cross covers for residents in both Georgia and South Carolina. The costs just get billed over to South Carolina and it still counts. But, there's been a whole argument about why insurance can't cover Mal's surgery in Georgia. Stephen says that the surgery is across South Carolina state lines, but it's still the same insurance. Therefore, it make sense that they should cover the hospital visit, but they don't.

Afterwards, the case manager told Mal to see an in-network doctor and get their opinion since it would help her case. The case manager was really confident that Mal's appeal would work since Mal brought up a lot of great points. In May 2021, Mal had a telehealth appointment through FaceTime with the in-network doctor. This doctor was also not in-state, but still counted as in-network which pissed Stephen off. The doctor was nice and knowledgeable about endometriosis, but they raised some red flags that Mal didn't like. The doctor told her that they weren't sure if she wouldn't need another surgery. Mal has some cysts on her ovaries, so she also asked if the doctor would remove them if they were bad enough. She was told that they wouldn't remove them and would just leave the endometriosis there and see how she did. They then said that they would do a 2nd surgery if it grows and gets worse. The doctor also wanted to have Mal take medicine post-surgery for basically the rest of her life. All of these things were a big no for Mal since the alternative, with her chosen surgeon, was to have no medicine post-surgery and to only have 1 surgery.

Mal talks about how there's a list of surgeons on a website called iCareBetter that was founded by endometriosis specialists. In order for endometriosis surgeons to get on this list, they have to submit surgical videos of themselves removing endometriosis. The surgeon in the video is anonymous, so other surgeons can only rate them based on how well they did the endometriosis surgery. Surgeons are then put on the list if they are rated highly by enough surgeons. The surgeon that Mal chose is also on that list.

After the appointment, Mal called her case manager who requested letters from the in-network doctor and Mal's surgeon. The letters basically needed to state what they were going to do, what they think the outcome is going to be, and their thoughts. The in-network doctor never ended up sending a letter even though Mal's surgeon sent one. Mal had written a 9 page formal letter talking about her family medical history, and what she's gone through for her appeal. She also cited and included 80 pages of medical journals which they mailed to insurance. However, the denial for the appeal came back very quickly after they sent it. Also, the only reason stated for the denial was that the surgeon was not in-network which was upsetting since they didn't mention anything Mal had talked about. The case manager then told Mal to do an external appeal. But, the insurance handbook had mentioned doing a 2nd appeal before the external appeal. So, Mal rewrote her appeal which became a comparison between the in-network doctor and Mal's chosen surgeon. Basically, the main point of Mal's 2nd appeal was that it was in Mal's (the patient's) and insurance's best interest to cover only 1 surgery instead of multiple surgeries. She also sent in the 1st appeal for reference.

Mal had tracking on the 2nd appeal and insurance said they would get back to them in 14 business days. They waited for 14 days with no reply from insurance. So, they called insurance and no one knows where the appeal is and there's no record of it. The tracking said that the appeal had been delivered to the P.O. box and had been picked up. So, they defintely have it but they lost it. Stephen says that it's infuriating that consumers are screwed if they miss deadlines with insurance, but insurance doesn't recieve any reprucussions if they miss deadlines. They had both contacted the State Board of Insurance and asked what would happen if insurance misses a deadline. The Board of Insurance just told them that they would do an "investigation" and basically nothing happened. Since insurance lost their appeal, they decided to fax it this time. Two days later, they recieved a denial with the reasoning being "no out of network benefits". Stephen wonders if they're even reading the appeal or if they're instantly denying it after seeing the surgeon is out of network.

Stephen says that they understand that the surgeon is out of network and that's the whole point of why they are writing the appeal. They know the surgeon is out of network, but there's no one in-network who can do the same level of care. Stephen apologizes for getting worked up since he's a really mad husband right now. Stephen then talks about how the external appeal goes to a state medical board and gets reviewed by a doctor who is not related to insurance so that they aren't biased. Mal adds that the medical person reviewing her appeal would at least be someone who has some background in gynecology. They might not be a specialist, but they do know more about it then maybe a general physician. They then go back to talking about how Mal wrote a new appeal and faxed it. Stephen mentions that there was a whole vlog about them standing in Office Depot for a long time just faxing.

At this point they have been fighting against insurance for months, and they had given up on insurance covering the surgeon. But, they wanted insurance to at least cover the hospital visit. They made several calls to the hospital which told them everything was good. But, when they called insurance they were told that insurance would not cover it under any circumstances even though the hosiptal has a partnership with Blue Cross. Mal then recieved a letter asking them to email any additional information or medical records they have, but it didn't even list what information they already had. So, Mal just sent in everything including all the appeals up until this point.

They've been talking to patrons and close friends all throughout this journey who have also had endometriosis. They've been told by multiple people that they've had to have multiple surgeries or surgeries that their doctor thinks treats endometriosis, but really doesn't. There's also such a large difference in patient reviews for the surgeon that Mal wants to see compared to the in-network surgeons.

After Mal sent in the external appeal, she scheduled her surgery since she knows how long it takes to get scheduled. Mal's surgery is scheduled for November which is next month. They thought that Mal would've already gotten surgery last year after Extra Life 2020. But, it's been a nightmare trying to get insurance to cover something that they both think they should, but won't. Mal cried on the day she scheduled the surgery since she was finally going to get it done. Stephen's talks about how he's seen how much pain Mal is in on a day-to-day basis and how there are days where she can't even work because she's in so much pain. Mal talks about how there have been streams where she has asked Stephen for a heating pad or Ibuprofen and it was because she was dealing with endometriosis. They both start tearing up while Stephen talks about how heart-breaking it is to see Mal in pain and how it's like hell for her. He doesn't ever want to see Mal in pain and hopes they can get Mal the best care they can.

Mal says that her quality of life has gone downhill a lot. There have been days where they go for walks and she's in so much pain that she feels like sitting on the curb and telling Stephen to go get the car. She also hasn't played DDR in a long time due to the pain. The pain has also affected her painting. Mal's had to make accommodations by putting her painting supplies on glass tables within arm's reach since she's no longer able to bend down due to the pain.

Stephen mentions that this next part of the story hasn't even been told to the patrons yet since their last Patreon video was in the beginning of October. They continue with the story by talking about how the patrons had hoped that the external appeal would be approved. But, the appeal came back with another denial. However, the points that Mal brought up were talked about. The medical person reviewing it stated that there was no question that Mal had endometriosis and needed surgery. There was also no question that she needed excision over ablation. But, that there were plenty of in-network doctors in South Carolina including the one Mal had previously seen who are capable of doing the surgery. However, the medical person didn't name any of these other in-network doctors. Mal talks about there really isn't a surgeon better than her chosen surgeon based on the patient submitted lists for endometriosis surgeons. It's frustrating for both of them since they would've just scheduled this surgery a year ago if they knew this would've never worked out. But, they still had to at least try and get it covered by insurance.

For now, they are going to pay for the bill out-of-pocket and see if insurance might help cover something afterwards. Mal's been talking to someone that's willing to continue helping her with insurance stuff after the surgery. Stephen says that he didn't get his hopes up in relation to getting insurance to cover the surgery since he just went into the appeal process assuming that it was never going to work. He says that they could've gone with the in-network doctor Mal had seen since he wasn't a bad doctor. However, it didn't match with what Mal wanted, with what she knew about herself, and about her past medical history. So, they decided to get Mal the best quality of care. If they could get insurance to cover it then it would be great, otherwise they were going to pay for it themselves.

The surgery is expensive since it includes the cost for the surgeon, hospital room, operating room, anesthesia, and pathology. Mal explains that they do pathology on everything that's removed to check for diseases. Some surgeries require extra things like X-rays or CT scans, but Mal doesn't need any of those in her case. The hospital is also out of state since the surgeon only works at this specific hospital in Georgia. Stephen says that it's frustraing to think that at least the hospital visit would've been covered if it was a hospital in South Carolina. They didn't even want insurance to cover the surgeon--just the hospital visit. Stephen says that even if they lived in Georgia, insurance wouldn't even have covered the surgeon, but they would've covered the hospital visit. He mentions that they both had toyed around with the idea of moving to Georgia. Stephen says that if this wasn't an indication that something is broken, then he he doesn't know what is.

Stephen says that he will try to keep everyone updated about the surgery and apologizes for the huge dump of information. He then talks about how a lot of patrons had asked whether he was going to start a GoFundMe and the answer is no. The surgery is expensive, but not to the point of being life-altering or financial ruining. They can afford it. Stephen mentions that if he was in a position where he needed help, then he would've asked for it. He says that he may change his tune if Mal has to stay in the hospital for multiple days due to complications and the depressing 5 digit number turns into a horrifying 6 digit number. But, there's a very low chance of that happening. Stephen says that they are in a fortunate position to be able to pay for the surgery, so he doesn't want to ask for help. He can't stop people from wanting assist them, but they would just be supporting them through the usual ways like on Twitch, Patreon, and through buying merch. They don't have any plans to open a GoFundMe, but if anything changes he will let everyone know. He hopes that it doesn't happen since that would mean that Mal had complications during surgery.

Mal then talks about how there is no test for endometriosis and how there's no way to do imaging to see if you have it. Doctors don't know if you have until they go in for surgery. Mal only knows what stage of severity she's in because her surgeon is an expert in this field. She jokingly says that Stephen will probably be the first one to know how well her surgery went since she won't know until she wakes up.

They then talk about how they just did Extra Life 2021 even though Mal's surgery is coming up soon. Stephen says that there's a lot of stress when putting on an event that raises over $100,000. Mal was also dealing with anxiety due to thinking about her upcoming major surgery. Stress makes her endometriosis flare up, so she had a rough Extra Life. Mal says the chat, all the art, and the thought of raising money for a good cause made this Extra Life great for her. She mentioned that she went to go lie down during Ni Hao, Kai-Lan: Super Game Day because of endometriosis. Mal says that she's not allowed to take any of her normal medications except for acetaminophen since her surgery is coming up, but acetaminophen doesn't take any of the pain away. So, Mal can only use heat to deal with the pain. Mal is also not allowed to have caffeine. She mentions that a lot of her allergies are from endometriosis.

Stephen thanks everyone for watching especially if they watched the entire video. He tells the viewers that if they're like Mal, and their pain levels seem abnormal compared to their friends, then it's not just cramps. Stephen says that if the symptoms aren't bad and the pain is manageable, then it's your choice if you want to do something about it or not. But, if it's affecting your quality of life, then you should start looking into what options you have.

Stephen's big hope is that Mal gets better and he's excited that she won't have to suffer anymore. He's not thrilled that they ended up having to pay for the surgery despite fighting against insurance for over a year. But, they are in a position where they can get that care, so he's going to get her that care in order to take care of his wife. Stephen says that he will be updating about the surgery soon and he hopes that this video has helped somebody.

They are both getting a COVID test tomorrow in preparation for the surgery. Stephen says that he will try and get this vlog out before they go to Georgia. He doesn't know when he will release more vlogs since they are both busy preparing for the surgery. Stephen tells viewers to leave any questions/comments about endometriosis in the comment section. He says that they have a great, supportive community of patrons and viewers not on Patreon, so hopefully they can share some advice or things they've learned to other viewers. They both hope that this video reaches someone and let's them know they don't have to suffer.

It's Mal's 1st time getting surgery, so she's feeling anxious. Stephen mentions that he didn't have a choice when he had his previous surgery. He just thought he ate some bad sushi, but found out at the hospital that his appendix exploded and needed to be taken out right away. Stephen didn't have any time to dwell on or agonize about the surgery like Mal is doing right now.