Amanda Michelle Jones

Amanda Michelle Jones, Ph.D. student, has stage IV endometriosis. Endometriosis is a painful gynecological condition that directly impacts the uterus, ovaries, bowels and other aspects of the pelvic region, according to the Mayo Clinic. The tissue lining the uterus spills out. The endometriosis tissues still operate normally during menstrual cycles, causing intense pain for those affected.

Endometriosis can also cause fertility issues and have long-term health impact. Jones, a self-identified “connector of people and resources” was diagnosed with the condition after an ovarian cyst led to an emergency room stint. A subsequent surgery uncovered advanced issues, including the fusion of Jones’ colon to her uterus and her cul-de-sac, the cavity between the rectum and the uterus.

The blogger has been assertive in seeking treatment. Her initial surgeon called her stage four endometriosis the worst case she’s ever seen. Jones writes in a blog post:

There were implants all over my pelvic cavity – on all my organs except my stomach & appendix. While the doctor was able to clean me up, she could not do anything about the endometriosis on my organs or about anything that’s fused together. I also have a cyst on my uterus. She couldn’t remove that, either, not due to impossibility, but due to her own comfort level. I appreciate her not experimenting in my pelvic cavity.

Rather than losing hope, Jones enlisted the assistance of Camran Nezhat, MD., a leader in progressive fibroid and endometriosis alternative treatments. Jones, a second-year social work Ph.D. student, reached out to Dr. Nezhat through Twitter and submitted her medical records to him through email and through the hospital where she had her initial surgery.

Dr. Nezhat has agreed to perform the surgery. However, the endometriosis surgery is expensive. Some of Jones’ expenses include traveling from Chicago to California to visit Dr. Nezhat’s clinic, hotel, travel expenses and a vehicle to transport Jones from the hospital to the hotel.

She has launched a HopeMob campaign to raise $5,600 before her surgery in June. There are 14 days left to donate to Jones’ campaign. Even if you are unable to donate, Jones’ has words of advice for all women: Go to a gynecologist if you have painful periods and have your hormone levels checked.

“This means a full thyroid panel, testosterone, progesterone, estrogen, & cortisol,” she writes in an interview. “Unfortunately, most GYNs aren’t interested in doing that, which is why I went to Marcia Scoville. She specifically focuses on bioidentical hormone replacement, creating customized courses of care for each patient as an individual. It’s hard to find a BioHRT specialist who isn’t gimmicky, but it’s worth the search!”

You can donate to Jones’ campaign through HopeMob and send messages of support through Twitter.

  • Indeed

    So we’re supposed to donate to her when there are thousands of women with the same or similar issue because? Does she work? Has she tried to secure employment since learning of her condition? What about her family?

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Greetings, Indeed! I would like to address your concerns as I am sure you are not the only person to have them. I discuss most of this on my campaign page, but I will also do so here.

    Stage IV endometriosis is the most intense level there is. My grandmother died of what we now believe was an ovarian cyst caused by endometriosis. She was a year older than I will be at the time of my surgery.

    I am not asking for help because I am any more deserving than any other woman with endo. At the same time, I am no less deserving, either. I am asking for help because I do not have the means to make this happen alone but I know the power of community.

    I do not work because I am in a full-time PhD program that does not allow students to work more than a few hours a week. If I was able to secure family support, that would be the first place I would look. However, that is not an option for me. My mother is working to be there for the process.

    There are, in fact, millions of women living with endometriosis. Your comment indicates you may be concerned about endometriosis more broadly. We definitely need more allies, so please visit the Endometriosis Foundation or the Endometriosis Association to find out how you can support the broader cause of improving research & awareness.

    Thank you for reading and inquiring!

  • LaCharles

    Hi Indeed,

    If you visited the actual website you can read her story in more detail as opposed to writing snarky comments. Sigh. Not to speak for her, but as a Ph.D. student (because I am one), you aren’t supposed to work because you are on assistantship or fellowship. Her job is typically research or teaching. On her website, she highlights her situation with insurance, had you read that, perhaps you wouldn’t have the aforementioned condescending questions.

  • MamaB.

    To Indeed,

    We aren’t ‘supposed’ to do anything except what your heart desires.
    However, I don’t think it’s a bad idea to ask for help and for people to help if they can. She can’t afford the surgery. Even if she was working, it is common to not be able to afford surgery.
    And another thing: when you are ill, do you think working/’securing employment’ (in addition to her PhD program responsibilities) will lend to her healing process?
    And what of her family? She already said she can’t afford it. To me that implies that she has explored all other options and has come to the point she has to rely on charity from people she does not know. Are you worried she is going to stash the money for some other reason?

    That was more than I intended to write. Good day/night.

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you, LaCharles.
    I posted a more narrative comment addressing Indeed’s concerns (as I know many others may have the same), but it didn’t seem to come through.

    The short, bulleted version:
    *LaCharles is right, I am not allowed to work more than a few hours due to program restrictions.

    *My family support:
    ~my mother is doing what she can by taking time off work to come be with me throughout the process (she lives 1400 miles from me).
    ~my partner is trying to make arrangements & pull together the resources to be with me in recovery (he lives 800 miles away from me).
    ~my chosen family is part of the extended network I have reached out to. Those who could support have done so through the tax deductible campaign & by sharing. That network is actually how Evette Dionne found out about my story!

    *I do not consider myself any more (or less) deserving of support than any of the millions of other women across the world dealing with endo. I do what I can to encourage my fellow #EndoSisters via Twitter and those I know offline because I know this journey is impossible to survive alone.

    *I encourage anyone who is concerned about endometriosis more broadly to visit the Endometriosis Foundation and/or the Endometriosis Association to find ways to support research & awareness.

    Thank you to everyone for reading & to Indeed for expressing your concerns! Please feel free to contact me directly with any questions.

  • http://gravatar.com/jamesfrmphilly jamesfrmphilly

    i made a contribution….

  • http://gravatar.com/jamesfrmphilly jamesfrmphilly

    i posted your story over at destee….

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you for your contribution and for reposting!

  • http://www.memystyleandi.com Hana

    Hi,

    I just wanted to quickly say I have a loved one who suffered from endometriosis so I know how this can affect someone. She actually had surgery (for free, she lives in the UK), but later on in life she got some healthcare privately in Germany & found out that the surgery had actually made things worse. The only parable she gave me was shaving hair to remove it, and making the hair grow back even more. I only mention this to urge you to please check all your options (as I’m sure you have). The loved one in question found out that her endometriosis (and poycystic ovaries and breast cancer!) was a result of a hormonal imbalance caused by poor diet, lack of excercise as well as other environmental factors. Please look into this! I wish you all the best xx

  • Shaorn Lowd

    Most people generally make the appropriate adjustments in their lives when it comes to money. For example, my husband and I tried for years and years to have a baby, and because we could not afford IVF or other expensive procedures, we gave up and accepted it and continued to live our daily lives. There was no internet or other public means available to solicit donations – WE could not afford it and it was OUR problem. What I’m trying to say is why doesn’t Miss Jones postpone her Ph.D work and get a job with medical benefits. My husband finally got his Masters and wants to return to college and get his Ph.D, we cannot afford it right now – we have this small financial problem that requires us to pay for his Prostate cancer treatments – he is working, he is sick and he is in pain, but he cannot afford to stop because he needs the medical insurance benefits. Good luck Ms. Jones – somehow I just can’t bring myself to donate, although I hope you get better. I totally understand your pain; I’ve never had endo but I have had several uterine cysts and several gyno procedures and it’s hell!

  • Sharon Lowd

    Snarky comments? You young adults amaze me – you seem to have such a sense of entitlement – in today’s economy, a Ph.D is a luxury. Oh, I know you disagree and that’s fine – but, working on an advanced degree is a personal choice – as is my decision to not really care if you receive your Ph.D. I’ve done all sorts of work since I was 15 yrs old and if my comments sound condescending, I’ve earned it. Talk to me when you’ve been working for 40 years.

  • amberlina wicker

    I would like to make a contribution by mail. Is there a mailing address I can send a check to?

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Yes! Diet & exercise are everything. I actually found out about the endo after being on a gluten-free, organic diet for almost 10 years. My doctor thinks I’ve had the disorder since I was a teenager, given my history. She said the dietary changes may have delayed the progression a bit.

    As I mentioned on the campaign page, I also see someone who specializes in hormone balancing, so we’re doing everything we can to keep new developments at bay. I’ve also gone chemical-free in all my beauty & healthcare products, as well as my cleaning products. (For those who don’t know, many chemicals function as xenoestrogens – they contribute to estrogen dominance, one of the factors of endometriosis).

    As for exercise, several injuries + being in grad school have made it difficult to find an exercise regimen that works, but I do bike a couple miles daily.

    Thank you for your best wishes!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Hi Sharon!
    Actually, I feel quite fortunate to be enrolled in my PhD program during this time, as there is no way I would ever have been able to afford the healthcare I need without the insurance that my school pays for. The insurance available in the (non-government) social services field has been generally atrocious, in my experience.

    I am sorry that you feel so upset about your work experience. I felt that way in my own career and embarked on a PhD because I knew it would open doors for me to do the life-changing work that I have been called to do. I know not everyone has the opportunity and I try to cherish mine as much as possible (even on the ‘bad’ days).

  • EbonyLolita

    Either you give or don’t! But it doesn’t help her cause to make a judgement call on her inability to afford a surgery to improve her life. I would do the same & personally know someone w/this disease who will receive treatment in NYC for FREE through Medicaid. The world is really turning into a sad place when those who seek help are shunned like this. I will donate! My lil coins will add to your healing Ms. Michelle !PopStyle!

  • Mrs.W

    Hi Amanda Jones~
    Thank you for posting your story. More black women need to be made aware of this condition, and not made to think its just bad cramps. I have the same condition as you. It was speculated early in my teens, but I was not diagnosed until my mid-twenties. Are you speaking of having a laparoscopy? I just had my 2nd one last June. If you would like to speak more, please feel free to reach out or asking more questions. But, I wish you all the best and a healthy reccovery.

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Hi Mrs. W!
    Yes, I’m having a laparoscopy. I had one last year, actually; that’s how I found out about the seriousness of my case.

    Thank you for the wishes!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    hi, amberlina! please email me: amj(at)amandamichellejones(dot)com

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you for your support!

  • Wong Chia Chi

    …wow, just…wow. If you don’t want to donate, that’s your prerogative. But please, don’t offer condescending advice. Even if she were to drop out of her program, and I loathe the notion that in an industrialised developed 1st world country, such as this one, people can’t afford to have the “privilege” of health care and an education when countries poorer than us, at various levels of efficiency do that for their own citizens.

    But even if she were to drop out of her program, what makes you so sure that private insurance would cover the cost of the surgery, assuming she got the insurance in a timely manner? It depends on the insurer, and if it’s a preexisting condition they may not cover the cost of the operation, for one BS reason or another,and in the event that they do, the deductible would still likely have to be paid out pocket. And that is ASSUMING that she can get hired, even with her good education and work history at a job that PROVIDES benefits. And if she gets hired she will likely have to go through a probationary period of a year. While still living with this condition. Has it ever occurred to you that maybe the chronic pain of having organs fused together and the lining of your uterus exposed might make putting up with the demands of a 9-5 difficult next to impossible? And I know you probably know people that do and have done it, but that’s not the point. We should not expect sick people, with what sounds like debilitating pain, to work to pay for their own operations.

    This woman is one of the people working to make this country better. And I’m sorry about your fertility problems and the health problems of your husband, but this woman is in intense pain and it sounds like this is medically necessary. She’s doing something noble with her life, getting an education, and not just for herself, but so that she can help people, and she’s reaching out to her community and this is the response she’s getting? I know people are cynical and cold but this is too much.

  • Niecy

    You know, instead of encouraging a young black woman to drop out of school, you could show a little bit more compassion. As helpful as some black people are, I’m sure she’s already gotten this speech from her family and friends, which is why she has to rely on complete strangers to help pay for surgery. What if the surgery is urgent? How long do you think it would take her to accumulate that money with a job, let alone find a job in this job market?

    It sucks that you guys couldn’t have a baby and you just gave up…But giving up is not an option for everybody. Why bash her for trying to use this method for paying for her surgery, instead of potentially worsening her condition by working? According to her post, the problem is serious and could possibly be an even more serious health issue for this girl later on. Why even comment if you don’t see the value in helping? Since you decided to suffer in silence instead of reach out for help, did you just want points for your story?

  • Niecy

    Okay. I really don’t like these comments. Don’t bash someone else just because they decided to pursue higher learning and you didn’t…Maybe if you pursued higher education you wouldn’t have to be doing “all sorts of work” over the past 40 years. Your type of thinking is exactly the reason why minorities are underrepresented in undergraduate and postgraduate programs across the United States.

    Spending money is a form of speech people. If you don’t think she deserves the money, then don’t donate. Your two cents do nothing to help the situation. You see she is reading and responding to all the comments, she doesn’t need to see this mess.

  • The Moon in the Sky

    You don’t have to donate, but to suggest that she postpone her PH.D work and get a job with medical benefits is a bit insensitive.

    Do you know how hard it is to get a job with benefits nowadays?

    Do you know how long it takes to get a job nowadays?

    If she were to get a job with benefits, what should she do – use up the insurance and then quit and go back to her studies once she has been treated?

  • cosmicsistren

    @Sharon – You are not the only one who felt the same way. It’s like you get crucified if your comments don’t go along with the majority.

  • LMO85

    I don’t have much to spare these days but I just donated, sending you love and support with God’s Grace and plenty of blessings.

  • LeAnna

    Hey!

    I am glad that you are pursing a PhD (I just finished up my Master’s Degree)!!!!!

    I donated because when God blesses you, you are suppose to bless others! I pray that you get all the funds needed and a speedy recovery!

    Be Blessed!

  • MamaJ

    @Niecy,

    I am Amanda’s mother and I have never, nor will I every encourage her to drop out of school. In fact, she has my full support. It’s just that this time, I do not have the funds to give in addition to paying for airfare and taking unpaid leave from work to help her through this surgery. Please don’t assume that Amanda’s family is unsupportive when you have no basis for making such a statement.

  • Purple Rain

    Amanda,

    I understand exactly what you’re dealing with. I too was diagnosed with Stage 4 endometriosis with frozen pelvis and severe scarring. My fallopian tubes were stuck to my uterus and my ovaries were covered with endometriomas (endo cysts). Before diagnosis, I suffered from constant cramping, even when I was not on my period. I too found out about the condition after an emergency room visit due to severe pain from a ruptured cyst. I was fortunate to have insurance that covered the laproscopic procedure and also VERY fortunate to have a doctor who was able to clean up most of it. I have since changed my diet, changed skin care products (avoiding ones with estrogenic compounds) and began taking supplements to balance my hormones. I was only 21 when diagnosed but I’m fortunate that roughly 95% of my old symptoms are gone. My surgeon told me it was one of the worst cases he’d ever seen and would have completed a full hysterectomy if I wasn’t so young at the time.

    I cannot afford to donate but I wish you the best in your journey to recovery. Recovery is possible, you just need to find the best healing method that works for you!

    -Purple

  • MamaJ

    Thank you to everyone who has helped Amanda by either donating to her campaign, retweeting her story, expressing support and all the other kind, helpful acts. I appreciate your support of my daughter.

  • http://gravatar.com/cocovabarbie KemaVA

    I donated… I have recently been having issues with hypothyroidism and gluten allergies. This is bad enough so I cant imagine experiencing pain in the way Amanda does.

    Yes, there are others that have endometriosis but Amanda is the one that came here and asked for help. I hope you feel better, Amanda!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you!

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    I appreciate that. I always believe in paying it forward & await the day when I can do the same.

  • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

    Thank you, Niecy.

    While it’s disappointing to see some of the responses, I figured some people would be against the idea from the outset. As many have noted, I’ve exhausted my other options, so I did as much as I could to head off some concerns from the beginning and prepared myself to respond to others as they arose.

    I am grateful to everyone who has supported through kind words, sharing, and/or donating to my campaign! As of right now, we’ve raised $2072, with 10 days left. The last week or so tends to be the height of most crowdfunding campaigns, so I’m waiting with bated breath!

  • Sharon Lowd

    Thanks “cosmicsistren”, but I expected it. My comments were not meant to be offensive or condescending – they’re just my personal opinions, that’s all. I know most of what I feel is based on the generational differences between Ms Jones and myself. It’s just that most people my age and maybe a little younger would first contemplate what they could do on their own. I’m so confused – it’s as if I told her to go pick cotton. When did it become wrong to handle your own business – when did it become wrong to postpone something? I must be missing something, because they really went after me. I know the economy is bad and I know it’s difficult to get a job with benefits but that does not change my feelings. What I find truly amazing, is the fact that my infertility issues and the fact that my husband has prostate cancer is just a non-issue – apparently nothing else matters as long as Ms Jones finishes her Ph.D. I have no problem with the jobs I’ve had, it’s my life’s history. Degrees guarantee nothing – I have 2 relatives with at least 2-3 masters degrees – they’re both broke as hell, miserable and unhappy – because they both thought that “degrees” would open up any and all opportunities; they’re both resentful and I’m pretty sure that their resentment shows up in their attitude when they interview for jobs. There are many people (my self included) working to make the world a better place, and our efforts are no less important because we do not have Ph.Ds. Even if I choose not to contribute, I still have a voice and I will not be silenced because I am not a part of the majority. As I said before, I wish Ms Jones the best – I know pain – before I medically retired I worked for about 7 years while suffering from degenerative arthritis. I used to sit in my car and cry everyday before I went in to begin my day; I would load up on my pain meds and then pray that they would last through my shift. My doctor/surgeon told me that he would do surgery when I could no longer stand the pain and even after retiring I waited another 4 years because there are others in my family that needed me here and recovery would involve several weeks of physical therapy. Life is hard and you do what have to do and you do what’s best for you – everyone is different and I can accept that without resentment and anger – CAN YOU? Thanks again “cosmicistren”.

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