Share your Story : Kyla

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Kyla is 34-years-old.  Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…

Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.

Because of the hematomas, I have had several CT scans since surgery to monitor my condition. At my last scan they found a nodule on my lung which I have learned can be a symptom of thoracic endo. While discussing this with my mother, she told me that my Dr. told her after my surgery that she had removed old endometrial tissue.

I just feel like there are things going on that have not been completely “fixed” by the surgery. I have suspected endo for many years and actually felt foolish after my doctor didn’t mention it at all…but now I’m finding that she did mention it to my mother so I just don’t know what to think. And as for the lung nodule, I have not had a confirmation as to what it is, I go for a re-check to see if it’s still there on the 21st…. But I am suspicious of the seemingly “mystery endo” … I don’t know if I should just ask my Dr. About it or wait for her to possibly mention it?

I don’t know how to proceed at this point. I still feel like I am experiencing endo symptoms and am definitely concerned about my lung.

**

 

Kyla needs our help.  She wants to know if she needs to push her doctor for further information, if she should discuss the nodule on her lung, and her symptoms.  If you wish to contact Kyla, please email her at kilyien@gmail.com.  Or if you leave a comment below, I’ll make sure she receives it.

 

I want to send a special Thank You out to Kyla for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story : Hailey

15016 Donaldson, Hailey-6-2

Hailey lives in Okalahoma.  When she was 22 years old, she received her Endometriosis diagnosis.  Now, over a decade later, she offers some stellar words of advice!!

Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.

I grew up in a house where “that time of the month” wasn’t really talked about. I have 2 older sisters so as long as the bathroom was stocked with tampons no one ever talked about it. I got my first migraine with my first period. Which was in 4th or 5th grade. They have always been miserably painful and heavy but being as they were always that way and I was to shy to ask any different. The older I got the worse I got, once I hit highschool we added cyst on top of everything else. I would miss school at least 4 or 5 days a month. I think it was my freshman year my mom finally took me to see a neurologist because all the ER would do was give me a double dose of morphine and send me on my way.

After several rounds of hormone injection and 3 days in ICU I was pain free for about 3 months. After that I struggled through different birth controls and medications until my early 20’s after a 2nd trimester miscarriage and inability to get pregnant again my OB finally agreed to do a scope. By this time he had me feeling all this was in my head and every woman was uncomfortable during her period. Ugh!

Tada he came straight out of the OR and told my husband I wasn’t losing it, he knew exactly what it was but would need a lab to confirm it. I was able to get 2 amazing boys out of this body before it decided to completely launch a war on me. I had done about 15-18 months of Lupron and when that only lasted about 2 months past my last injection I gave up on my Dr.

We relocated due to my husbands job and the amazing woman I found that was familiar with Endo. gave me one look and said- “please let me help you be pain free.” She listened and cared and for once didn’t make me feel crazy. I wanted a life back, actually I wanted a life better than the one I thought I had. I wanted to cuddle with something other than my heating pad. So in 2013 I gave up my war and got a hysterectomy at the age of 28. She was able to salvage one ovary for hormone production and she was also clear this was not a cure and it wasn’t 100% guarantee.

Today I live my life, I am able to do things I was never able to before. I can’t lie and say that when my friends announce they are pregnant that it doesn’t sting somewhere in my heart because it does. I would say I am 85% pain free, if I keep my diet and lifestyle in check I don’t have a lot of symptoms, but when I don’t I can tell and BOOM HELLO FLARE UP! It’s amazing how I can still swell up and cramp when I have no dang uterus. I will also say close friends cycles sometimes cause me some angst, I still breakout along with them. Geez someone definitely didn’t think it through when the female body was designed!

Words of Advice for Us:  I myself don’t have a daughter but I urge those who do, talk to them about their periods. Let them know what is normal and what is not. Bridge the gap window of 8-10 years to diagnose. No one should have to go through life feeling like they are crazy or it’s all in their head! It’s an uncomfortable conversation I am aware, I have boys and we have to talk about things I never wanted to know also!

The Last Word:  I don’t think there is a single right or wrong treatment answer for any of us. Every time I come in contact with an Endo-Sister and we swap battle stories they are so different even if the outcome is the same. Never give up finding your peace, you’re the only who knows what that looks like.

If you wish to contact Hailey, you can e-mail her here or follow her blog: https://nragefitness.wordpress.com/

I want to send a special Thank You out to Hailey for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Although I still have my uterus, I know that sting you feel when friends announce pregnancies.  I haven’t been able to conceive and it just creates a tender spot…ANYWAY, thank you SO much for sharing!!!  Yours, Lisa.

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Truth, Theory, or Tall Tale?

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The treatment that worked to control my Endometriosis will work to control your Endometriosis.

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We’d all like to think that the medical community has such a hold on Endometriosis that they know which treatments will work for all sufferers.  But, unfortunately, it isn’t so.  It’s kind of a guessing game.

Lupron Depot worked for some women, yet doesn’t work at all for other women, AND can completely cause severe life-altering, permanent side effects for other women.

Birth control (pills, injections, IUD, etc.) may work for me, but it may not work for others.

NSAIDs may work for me, but guess what?  Not everyone can feel the benefits of these pills.

A change in diet may work for a lot of women in controlling or suppressing their symptoms, but not every woman.

A hysterectomy may work for some, but not all.

Having a child may work for some women, but not all.

Excision or ablation surgery may work to alleviate symptoms for many women, but not all.

Herbal supplements may help some women, but not all.

Eastern medicine, or other non-conventional treatment, may help a lot of women, but not all.

It’s a crapshoot.  Each one of us who suffers with Endometriosis must decide which course we will take.  Try numerous approaches.  Continue to fight until we (hopefully) find a course of action that helps alleviate the pain and other symptoms of this disease.

And yet, there are some women who have exhausted each of these remedies, but still continue to suffer.  Lost. Hopeless. In pain.

But the one thing we all have in common?  We all have each other.  Hang in there, Sisters.

Truth, Theory, or Tall Tale?

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You’ll stop having Endometriosis symptoms, pain, adhesions, and surgeries once you hit menopause.

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There have been many documented cases of women still having Endometriosis symptoms and pain even after entering menopause.  There has even been a 78-year-old woman who had to undergo excision surgery! 78!  And this woman had a hysterectomy in her 50s.  Further providing evidence that a hysterectomy will not cure your Endometriosis (although it may take away some of those monthly uterus pains).

Women who have Endometriosis and are peri-menopausal, menopausal, or post-menopausal (whether naturally or surgically-induced) will need to talk to their doctors about any hormone replacement therapy (HRT).  Some believe that the supplemental introduction of estrogen may increase your chances of recurrent Endometriosis, especially if some Endo implants remain in your body.  Some women also continue to suffer from the digestive and bowel-related issues.  It is also important to note that your ovaries are not the only estrogen-manufacturers in your body.  Your liver, for instance, manufacturers estrogen.  I repeat: talk to your doctor.  Especially if you fear your Endometriosis has returned.

Keep heart, though.  Many women report a huge decline in their Endometriosis-related symptoms once they hit menopause.  However, as you know: Endometriosis is different for every woman. Only time will tell.

Resources:

Endometriosis Association

U.S. National Library of Medicine

WomensHealth.gov

Women’s Voices for Change

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Bad Gas!

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As much as I’d like to giggle, I’m not talking the *funny* kind of gas.  I’m referring to the Carbon Dioxide case trapped in your body after a laparoscopic surgery. Approximately 35-80% of patients who undergo a laparoscopic surgery complain of shoulder pain.  It is reportedly supposed to last for up to 72 hours, but some women have the ongoing pain for longer (mine lasted a few days longer).

During a laparoscopic surgery, Carbon Dioxide is injected into our abdomens to create a distended abdomen, a big balloon, so the surgeons can look around inside without all of our crammed organs in the way.  Some of that gas remains in our systems after surgery, causing pain. There are a few theories as to what causes the post-op pain in our shoulders:

1) your shoulder hurts because the trapped CO2 gas;

2) the CO2 gas causes “cellular death” and nerve irritation, which travels upward and manifests in the form of severe shoulder pain.

Whatever the reason: it hurts (seriously, the worst pain I’ve ever felt; paralyzing pain)! The Phrenic Nerve traverses along  the neck, between the lungs, and down into the diaphragm.  Carbon Dioxide induced pain can travel up this nerve and settle around cervical nerves.  Also, if you have CO2 gas trapped between your liver and diaphragm, it may cause further pain to your upper abdomen and shoulder.

Surgeons and  facilities can take steps to try to reduce this pain by removing as much of the gas from your abdomen prior to closing you up.  Some facilities even take great care in monitoring the temperature of the gas during the procedure (studies are out there to confirm if this actually makes a difference).

Whatever steps are taken, you may still experience shoulder and abdominal pain and discomfort. It’s normal. You’re not dying.  You will be okay…AND it will get better.

Tips for Dealing with the Pain:

1. Walk around a lot (well, as much as you can post-op)! It seems to help work out whatever is going on in there. I did a lot of slow laps around the apartment. Besides, this helps you avoid blood clots…

2. Use a heating pad!  Put it on the shoulder that hurts.  It truly did help me.  Personal tip : avoid cold packs or ice – only made it excruciatingly worse for me!

3. If you can, lay flat on your side.  It’s supposed to help.  Another personal tip: When I tried to lay flat, it only cause severe and sudden pain in my shoulders and lungs.  I did a lot of sitting up and laying back on a stack of propped pillows. Flat was not my friend.

4. Use Gas-X.  Oddly enough, began to make me feel better, faster.  You may want to check with your doctor if this is okay for you.

5. Drink warm beverages: peppermint tea, lemon tea, or even a glass of ginger ale.

If I ever have to have another laparoscopic surgery, this is the post-op side effect I will dread the most.  But knowing about it, and expecting it, will hopefully make it easier to bear.

Are you scheduled for a laparoscopic surgery and this blog has scared you? I’m sorry.  Please, please, pleeeease talk to your physician about it.  They’ll put you at ease.  I wasn’t aware of this side effect when it occurred (if my surgeon told me, I was too out of it to remember) and just wanted to let you know, in case you didn’t…

Resources:

Buzzle

Center for Endo

Steady Health

U.S. National Library of Medicine

Videoscopic Institute of Atlanta

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : Hysterectomies & Myomectomies Spreading Cancer?

I have heard that sometimes when physicians conduct a hysterectomy where the uterus was shredded/broken down and removed through small incisions then biopsied, cancerous cells could be detected during the biopsy.  And that the presence of those cancerous cells may remain in the abdominal cavity post-procedure, which may spread and continue to develop.  Some women who this happened to ended up having to go through a intense radiation therapy treatment to remove the cancerous cells.

In April of 2014, the U.S. Food and Drug Administration (F.D.A.) published a warning between hysterectomy, myomectomies, and cancer when the Morcellation Procedure is used.  The Morcellation Procedure uses a small “power saw” called a Morcellator to slice and dice the tissue. A myomectomy is a surgery performed to remove uterine fibroids (which are noncancerous masses of growth inside the uterine wall). The procedure is similar, the tissues are broken up, possibly releasing any cancerous cells into the abdominal cavity.  The F.D.A. found that 1 in 350 women undergoing these procedures have ” anunsuspected uterine sarcoma, a type of uterine cancer that includes leiomyosarcoma.” If these tissues are ruptured and/or shredded, it may spread the cancerous cells throughout her abdominal cavity.  “For this reason, and because there is no reliable method for predicting whether a woman with fibroids may have a uterine sarcoma, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.”

The New York CBS ran this story in May 2014, which can be viewed here: http://newyork.cbslocal.com/video?autoStart=true&topVideoCatNo=default&clipId=10114650

In 2015, AETNA ended coverage of most procedures using the morcellator.  More info can be read here.  In May 2015, the FBI opened an investigation of Johnson & Johnson to see if they knew of the risks of spreading cancerous cells.  More info can be read here.  (As of April 6, 2017, I cannot find any outcome of that investigation)

A report published in 2017 found that using specific specimen bags (in this instance, the Espiner EcoSac 230) led to fewer complications or spreading of cells and no bag-breakage during procedures.

So it has been suggested:

  1. If you have any history of uterine, ovarian, pelvic, or some sort of abdominal cancer in your family, avoid the “shredding” hysterectomy/myomectomy, known as the Morcellation Procedure.  Even if you don’t have a family history for any of these cancers, you may want to play it safe and avoid this procedure.
  2. Don’t get a hysterectomy unless absolutely necessary.
  3. If you DO need a hysterectomy or myomectomy, see if your physician can perform the vaginal hysterectomy, or conventional hysterectomy which removes the uterus as a whole, rather than breaking it down into pieces (thus avoid “freeing” the cancerous cells inside your abdominal cavity).
  4. In light of new research, also talk to your doctor about the possibility of using a contained specimen bag if you opt to use a morcellator during surgery.

Is this post meant to terrify you? NO!  It’s meant to educate you, to push you to have thorough discussions with your physician, to educate you to ask these types of situations. I learned SO much today, and thank my Reader who prompted this topic.  Always, always, allllways have deep, intimate, and long talks with your physician.  It’s what we’re paying them for…

**Updated 4/6/17**

Resources:

AETNA

CBS News

Journal of the Society of Laparoendoscopic Surgeons

New York CBS News

The Telegraph

U.S. Food and Drug Administration

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from my friend, who shall remain anonymous, “There is a laproscopic procedure where they shred the uterus to remove it, and there are issues with cancer being spread throughout the abdomen by this if there is any cancer in the uterus.” So let the research began!  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

A sit down with my Gyno

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So today was my last Liquid Crazy injection (yay!!!) and I also had a chance to sit down with my gynecologist/Endo surgeon to discuss future treatment and ask my giant list of questions.

I wanted to share the answers with you.  Please now that these are answers for me from my physician.  If you have similar questions, I encourage you to talk to your doctor. Your situation may be different than mine. Your doctor’s opinions may vary from mine.

But I do feel a lot better.  And since some of you helped me develop my list of questions, I wanted to share the answers with you guys!

  • How long until the Lupron Depot is out of my system? I know the medication is supposed to last one month, but when will the side effects go away?
    • It should be out of my system in 1 – 1.5 months. Maybe 2.
  • I have about 35 Northindrone pills left (5 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
    • As soon as I start taking birth control pills, stop taking the Norethindrone.
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
    • Every woman is different, but natural menopause should not be as bad as it was on Lupron Depot.  This was a chemically-induced state. Natural menopause should be a little bit easier.  I let him know my Mum didn’t even know she was in menopause, her symptoms were so light. Hoping I get the same gift. Ha!
  • When do I start birth control?
    • As soon as I pick up the prescription.
  • How long will I have to be on continuous birth control?
    • I can stop taking birth control if my significant other and I decide to have a baby and can start trying to conceive.  Although raising a child is something I’d wanted for a very long time, I do not feel it is right for us now. So likely will not be trying.  However, I can continue to take birth control until I am 48-49 years old, about the time when menopause will begin to kick in.
  • I know that women over the age of 35 should not take B.C., or be monitored while taking it. What sort of regular monitoring will we need to do?
    • Being that I do not smoke and do not have any negative history of blood clots, I’ll be just fine.  If I’m concerned, I can bring it up during my annual exams.
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
    • No.
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
    • It shouldn’t be too bad, but isn’t predictable.  I can expect to start my period after stopping the Norethindrone, and I can also expect to have my period every 3-4 months while on  birth control (this will be a continuous birth control, so less periods…yay!)
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
    • My gyno hadn’t heard of Lybrel or Amethyst and will do some research prior to writing the prescription.  He wants to make sure it will meet my Endo needs.  If not, he will prescribe his favorite low-estrogen continuous B.C. I let him know I didn’t want any of the birth controls like Yaz or Yasmin that have been involved in serious mass torts and class actions.  He agreed.  Per my gyno’s advice, I’ve posed the Gilbert’s Syndrome question to my Primary Care physician.  I expect the use of birth control will be just fine (I was on OrthoTri-Cyclen in my 20s) and should have an answer by the end of this week.
  • If I don’t like Lybrel/Amethyst, when can we try something else?
    • I didn’t ask this, especially since I’m not sure if he’ll prescribe it. Figured I’d cross that bridge if I came to it.
  • If I can’t stand B.C. at all, what’s another option?
    • I didn’t ask this. Figured I’d cross that bridge if I came to it.
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
    • If the Lupron Depot and continuous birth control do not help my Endometriosis pain, we may want to consider a hysterectomy to help reduce my massive menstrual cramps.  IF we did choose this method, he would only remove my uterus first.  If symptom continued after, we would then remove my ovaries.  Both of us agreed that this is a last ditch effort and it’s not something I want at all. I understand that hysterectomies are not a cure for Endometriosis.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
    • He doesn’t use transvaginal mesh for hysterectomies.
  • If I do need a hysterectomy, will I have to go on Hormone Replacement Therapy?  If so, will the estrogen make the Endo grow back quickly?
    • I also didn’t ask this question.  Figured I’d ask it if we ever have the Hysterectomy sit-down Q&A.  Interestingly enough, in our conversation he brought up how some women use soy to help with their menopausal symptoms : it has been known to mimic estrogen and help relieve symptoms.
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
    • My next appointment is in April for my annual pap.  We can decide then if I need another ultrasound.
  • When will I know if we need a second excision surgery?
    • When my pain returns, we can talk about this.  Hoping it will be several years.
  • I’ve changed my diet hoping to help keep symptoms tame.  I’ve also started taking supplements (Omega-3s, Folic Acid, Calcium+Vitamin D, Milk Thistle Seed Extract).  Anything else I can do naturally to help?
    • My doctor has heard that people have altered their diets to reduce any hormonally-enhanced foods such as red meat and dairy.  To avoid that as much as possible may be way to avoid any additional estrogen-increasing contact which may further aggravate Endometriosis.  Also, he said to avoid soy products, as it has been known to mimic estrogen.

I absolutely appreciate and cherish my doctor for taking the time today to listen to all of my concerns, answer my questions, and to do research regarding my choice of birth control.  I also appreciate his staff for making this process less of a terrifying ordeal.  My nurse has been amazing and a joy to see each month for my injection, and the receptionist has always made me laugh.

Finding the right physician’s office is critical to maintaining a healthy attitude during scary moments of questions and ongoing treatments.  If any of my readers are in the San Diego area and are looking for a good Endo specialist/surgeon, I highly recommend Dr. Mel Kurtulus and his staff.

Yours, Lisa

I need your help…

SOS

So this upcoming Thursday I have an appointment with my gyno/surgeon.  On January 15th, I will have my last Lupron Depot injection, and afterward will have a sit down with my physician to discuss what’s next.  I last met with him four months ago to discuss how I was feeling after my surgery, and what to expect in the future.

At that time, we discussed continuing the Lupron Depot injections for the full six-month course (which I’ve done) and after the completion of the injections, going onto a continuous birth control pill to help control the Endometriosis growth and pain.  He said the choice of B.C. was up to me, and after a lot of research and talking to friends who are nurses and attorneys (who have handled several mass tort cases against certain birth control pills), I’ve decided to try taking Lybrel (generic name Amethyst).  If B.C. doesn’t help with the pain, he ultimately feels a hysterectomy would be the best choice.  After all of the reading and research I’ve done, though, we all know it’s not a guarantee…

But what do I need from you?  I’m working on generating a list of questions to ask him during our appointment.  I know me, I’ll get so flabbergasted by all of the information that I’ll forget 50% of the questions I want to ask. So I plan on printing them out and walking in with a list.

If you can think of any additional questions you think I should ask, please feel free to drop me a comment below! And thank you!!!

Here’s the list of questions I’ve created so far:

  • How long until the Lupron Depot is out of my system? I know the medication is supposed to last one month, but when will the side effects go away?
  • I have about 38 Northindrone pills left (8 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
  • When do I start birth control?
  • How long will I have to be on continuous birth control?
  • I know that women over the age of 35 should not take B.C., or be monitored while taking it. What sort of regular monitoring will we need to do?
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
  • If I don’t like Lybrel/Amethyst, when can we try something else?
  • If I can’t stand B.C. at all, what’s another option?
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
  • If I do need a hysterectomy, will I have to go on Hormone Replacement Therapy?  If so, will the estrogen make the Endo grow back quickly?
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
  • When will I know if we need a second excision surgery?
  • I’ve changed my diet hoping to help keep symptoms tame.  I’ve also started taking supplements (Omega-3s, Folic Acid, Calcium+Vitamin D, Milk Thistle Seed Extract).  Anything else I can do naturally to help?

I’ll likely overwhelm my doctor with questions, but he has incredible patience, understanding, and has always listened to me.  I adore him and his staff and am looking forward to our meeting.

But again, if you have any suggestions for further questions, please drop a comment below.

Always yours, Lisa.