Between Us Ladies

There are recent developments in the world of bladder sling mesh that have me concerned. At the bottom of this blog I will post a link and tell you why I am concerned. What this makes me realize is that we have to help each other through all the trauma’s associated with bladder sling mesh while other things we normally have to deal with are also going on and we must spread the word about mesh, one woman at a time.

I am very grateful for the women who I now regard as friends, although many I have never met as yet. We are kindred spirits born out of a health tragedy that seems to have no end. So on this blog I am going to write about some of the things that women share with me.

First let’s talk about breast cancer. I cannot tell you the overwhelming sadness I feel when women have told me privately that not only are they dealing with the agonizing pain of mesh complications, but they have been diagnosed with breast cancer. This is why it is important you understand a few simple things you need to have checked. I have tried to write a blog about every aspect of dealing with mesh complications and how you have to have special vigilance to take care of yourself. Yes most of you have a busy life that you barely cope with as it is, but even now you have to take a step back and think about you. So get your vitamin D level checked soon. You can read more about it on this blog. http://meshangels.com/2013/02/running-a-mesh-marathon I did just that after writing this blog and although my doctor thought it unnecessary when I told him I had been faithfully taking 2000 mg of D3 daily, I forced the issue. I wanted to know where I stand. Turns out it was still lower than recommended and I increased it to 4000 mg a day. You need to understand that we have had such a trauma on our bodies with mesh complications and anything can take you down.

If it were not for the ladies who I have stayed in contact with I would not know many things that can impact and hurt or help. We can remain with our heads in the sand or we can take action. The choice is ours. So when women reminded each other about mammograms, one lady who has mesh complications sent a link to help others. She cannot have a mammogram because of her health. This is the link. http://www.natural-health-center.com/services/thermography.aspx?s_kwcid=TC You will see that you do not have to be exposed to radiation if your health is compromised. I found this very interesting and immediately shared it with my forty-one year old daughter. She read up on it and said she found places in Houston and a whole body thermograph cost $150. I have no doubt that a woman with mesh complications would have a body that would light up with many, many areas of inflammation.

Why am I writing about breast cancer? Because I know more than one woman who is going through this and they cannot have chemo treatments while the mesh is in them because their immune system is already compromised. One lady is in the process of going out to UCLA and hopes to begin her treatments soon after removal, but in the meantime she is also thinking outside the box and reading up and checking out every angle that there is to offer. So you can listen to one ‘outside of the box treatment’ in case you too are facing this. http://www.natural-health-center.com/services/thermography.aspx?s_kwcid=TC Dr Oz interviewed this doctor and it is on the Oprah Radio. My daughter and I did watch a full documentary about this treatment on Netflix, but you can also watch it for free here. http://www.youtube.com/watch?v=jRua3NLg-Z8

Now let’s talk menopause. I cannot imagine what it would be like to go through a hysterectomy and then be in absolute agony with mesh sling complications and be thrown into the symptoms of menopause all at once. Just yesterday my daughter took me into Houston to meet up with a lady who did live in this city awhile ago and while living there she had a hysterectomy. At the same time a mesh sling was put in her body. Immediately she was thrown into a world of agony where she thought she was going to die. Just like I found out, antibiotics could not cure her infections and then she sought another doctor in this city who removed a piece out of the center of the sling. She told me she actually felt relief and thought all would be fine. So she, her husband with four children moved back to Slovakia. Within six months the agony returned and her health began a serious decline. She sought help in her own country and they did not have a clue how to help her. She said that they thought it ridiculous that a woman has a sling put in along with a hysterectomy because women rarely need any help with incontinence or other issues. If they do, then will they tackle it the old fashioned way, mesh free, if and when they need it without the use of mesh, so she remained suffering and felt very lonely. Her sling was put in three years ago February just gone. She found my blog a few days after Christmas after doing everything she could to help her family celebrate but she barely made it because of her suffering. She called me on the phone and then made an appointment to see Dr. Raz.

Something this lady also told me had me wondering and I consulted with a medical friend who is also a mesh survivor. I feel we need to know everything about what is done to us because nothing is explained. This was my question.
“The lady thought that when the second doctor cut the piece out of the center that they washed out inside her to clear infection which is why she did okay for 6 months.  I told her I didn’t think that is possible and what they do is put you on IV antibiotics, which is what they did to me.  After that I went on marshmallow root.  Is there such a thing?”

Her answer came back quickly.
“Yes they can “rinse” out the cavity with an antibiotic type solution before closing.  I’ve seen it done many times, esp in cases where postoperative infection is a concern.  Usually IV antibiotics are also given.”

So now we all know this is what they can do and I too wonder if this is why I also improved after mine was cut nine weeks after it was put in me, but I hedged my bet with the immediate taking of marshmallow root.. So you now know why you can last for awhile after a partial removal before the symptoms come back and take you down a road of ill health. The reason is because when we cannot empty our bladders because the sling restricts the normal function, then this is why we have nonstop infections. After my own second surgery I was told by my doctor that I would have to take a small dose antibiotic daily perhaps for a very long time. For me that was not an option and I was horrified. Hence my turning to an old friend, marshmallow root.

Now for a warning about marshmallow root that I have just learned. Almost every woman has not had any problems with this product in fact it made them feel so much better. However a couple of ladies came back to me and said they had terrible stomach pain and it made their bladder want to work more, but the pain was too much. As I spoke to this lady yesterday, I got a bit more about her health status. When she saw Dr. Raz he is pretty sure the mesh is in her urethra and possible elsewhere. This will cause a blockage and you cannot urinate without extreme pain if it has eroded like this. So when you take marshmallow root, it helps you go more, which is bad for women with blockages. So if you find this happens, stop taking it. She did of course.

Another thing. I found a plus side to the root. It dropped my BP to normal and my sister told me at the time that she thought it was the B 12 I took. However, when I stopped taking the root, my BP went a bit higher. Not dangerous, but I knew it was up a bit so I went back on it and it is normal again. Well, as I talk to more and more women it has happened to them too which is a good thing for many because mesh issues have driven their BP high. It acts as a diuretic which if your BP is up due to your health issues, it can really help. HOWEVER, be aware if you are taking BP meds, it can lower it too much. So you have to decide what you take and watch out for things that could get worse, not better. The lady with the kidney complications that I just wrote about, told me this happened to her. She said the BP meds she was already given dropped hers too low to begin with and she has been complaining to her doctors that this has been happening. They are not listening. So the marshmallow root was not good for her. For me and other women it worked, but not everyone. I will be sixty-six years old this summer and I am terribly allergic to BP meds, so I will remain taking it and have not seen any side effects to worry about, in fact I feel so much better.

Now what do you do if you are thrown into menopause and you can’t take meds? Well, there are many, many women on the internet who share their solutions and my daughter found these women and decided to take her own symptoms in hand even though she is not in full menopause. She began having mood swings about a year ago that she felt affected her life and began researching. She sent me the links so that you can read up and decide what you want to do.
First she wanted to understand why she was having these symptoms and found this link where you can answer questions and it will tell you what could be out of whack. Hers turned out to be low progesterone. http://www.johnleemd.com/store/resource_hormonetest.html#answer

I asked her to share the type she bought to help and this is it…. http://www.womhoo.com

Plus she sent me this link so that you can learn more. Info on Chasteberry/Vitex… http://www.aafp.org/afp/2005/0901/p821.html

I can tell you this much as her mother. Boy is she a lot easier to get along with! LOL

The purpose of this blog is to share woman to woman with ideas that can help your life. HOWEVER, you must read and choose what you want to do or not to do. You must read all warnings and also pay close attention to your symptoms and changes.

If you are a mesh woman reading this and you know of other things that have helped you, please leave it in the comments. Without each other we would be walking in a world of darkness. Maybe together we can shed a little light.

As you know by now if you have continued reading this blog, that I stay away from everything to do with law and cases. But this is what has me worried. I feel women will be forever injured by mesh products and there will never be an end. So we must keep sharing about the perils of mesh.
http://www.pbs.org/wnet/need-to-know/health/video-left-to-their-own-devices/16568

Update.  I love a woman who has been through it all and still helps the women of the world.  A very good friend/helper sent me a note when she read my blog.  This is it.
I also learned a few things from my breast cancer. (prostate cancer is the flip side and most analogies can be applied to that also) About 70% of breast cancers are slow growing and most women would die with it, not of it. The problem is that the better we get at diagnosing breast cancer, the more the relatively benign types are being over treated. Cancer is big business. The word cancer scares the hell out of everyone and it’s easy to talk someone into surgery, radiation, chemo, and the newest big pharma option hormone therapy. I happen to be in the 5% of gene mutation breast cancer which are almost always aggresive in nature and usually strike at a younger age. For me and the 30% with aggresive cancers the treatment options haven’t changed all that much for the past 50 years and the outcomes are almost the same also. As many of us with aggresive breast cancers are dying of it than before. The figures get skewed because they lump all of the less aggressive breastcancers into the mix and it makes it look like they’re doing a better job of curing breast cancer. So much money gets thrown at it but unless everyone gets real about the truth here nothing will change. Women don’t want to hear that a mammogram isn’t the best way to detect breast cancer. They don’t want to hear that a wait and see approach might be best. They don’t want to hear that lifestyle changes play a much bigger roll than almost anything else. They don’t want to hear that chemotherapy doesn’t work very well on post menopausal women or that radiation therapy keeps  “working” for a decade after the last treatment. We all want a pill and a promise. There is so much money thrown at breast cancer but the truth remains illusive. The more cases that are diagnosed the more money can be had, but it doesn’t necessarily mean that more women are being saved. Prevention should be much more key. With my mutation I was at 84-87% risk. They think that the reason I didn’t get it until I was 55 was that I had always been thin, active and ate a largely vegetarian diet. Most women with the BRCA2 get it in their 30’s or 40’s. The whole reason I got the mesh was my hysterectomy because of my 40% risk of ovarian cancer which to this day there isn’t any good test for. The Ca125 blood test is only about 15% effective for ovarian cancer which is why most don’t survive it. By the time it’s detected it’s already later stage. I don’t tink the medical community is inerested in solving these problems of detection and best treatment. Only what will make the most amount of money. If you are diagnosed with breast cancer take the time to find out exactly what it is you have. The stage, the oncotype, etc. Sorry, I’m rambling.

I asked her if I could add it to this blog and she said, by all means if you think it is worth something.  Yes I do.  You see my husband had radiation for prostate cancer a few years before he died.  It messed him up and made him worse.  When we went back to see the urologist six months later, he said, “Well most men don’t die of it anyway”.
One of my sister’s went through breast cancer over two years ago and had a breast removed.  She began taking a drug that was said to hold it at bay.  I worried about her.  The side effects left her crippled and she barely gets out of the house anymore.  She lives in constant muscle pain.
However, when she tried to tell her female oncologist what was happening to her, she was dismissed.  “You need to take it” was all she was told.  guilt was thrown at her because  she was ‘too stupid’ to understand anything as complicated as her health.  When things got bad she was handed yet another drug.  This one is the popular one that is given out.  More bad times and she stopped taking all of it many months ago and never told her oncologist.  Why bother she told me.  She could care less what I say or what is happening to me.  So she carried on many months without taking anything.  Yes she worried, but the consequence of a harmful drug was much more to worry about.
She told me over the phone a few days she finally had to go back for her once a year appointment.  She had put it off two more months dud to snow and bad weather.  Everything is good and she was dismissed.  She told me that her and her husband felt like they had been let out of prison.  At last they felt free.

Update #2.
MY wonderful nurse practitioner friend/helper told me about a book that women going through breast cancer may want to read.  This is the title and description.
“The title is “What Your Doctor May Not Tell You About Breast Cancer”.  The author is John R. Lee, MD, a GYN who died several years ago in his 90’s after years of being ostracized by his peers for his beliefs that the man made hormones were bad for women.  It’s co-authored by David Zava, PhD, and Virginia Hopkins.  The huge study of over 40,000 nurses that is still ongoing had the hormone part of the study stopped early (early 2000s) due to “ethical reasons” b/c of all of the bad things they were finding out about the “fake” pharmaceutical hormones, esp progestin, a synthetic progesterone, which was marketed as being the same or very similar to progesterone, the “natural” hormone, because they couldn’t patent the natural progesterone.  So they tweaked a molecule and came up with progestin and sold that to Drs and women as if it was the same thing.  But if you tweak a molecule of water, H2O, you get H2O, or hydrogen peroxide, not even close to being the same thing….
Of course, Premarin is estrogen with progestin added to “oppose” the estrogen.  Women, esp those who still have their uterus, should not ever take estrogen w/o “opposing” it with (natural) progesterone.  The book is great at explaining all this in easy to understand writing using layman’s terms.
There are also two other similar books, different angles/takes on the same ideas.  These are What Your Dr May Not Tell You About:  1) Menopause and 2) Pre-menopause
Actually if you tweak a molecule of water, H2O, you get H2O2!  (Not H2O again!)….    🙂
Oh, and most probably know by now, that Pre-mar-in, stands for Pregnant Mare Urine…  And they keep these poor, unfortunate pregnant mares in small, closed stalls, with urinary catheters to collect their urine….
Or, at least that’s what I’ve been told…..
Hope this helps….”

So you think about what YOU want to do and research everything.  Don’t be scared into making quick choices.  This is your life.


 

 

3 Comments

  1. Bella

    Do you know if you can take marshmallow root if you are on a lot of medications? I have bladder problems, ever since my partial removal, I can’t seem to void, sometimes I have to use a cath in order to void but not much but my immune system is so out of whack. I can’t really take certain B vitamins, (I forget which ones) and iron due to my stomach ulcers, but I have really been wanting to take marshmallow root. I seem to never feel good anymore. Besides helping you feel better, does it also give you more energy?

    Reply
    1. InAZ

      Try squating on the floor in a tub or a bowl to void or stand up with a cup to void. The way we sit on the toilet constricts our urethra because of the mesh.

      Reply
  2. InAZ

    It is a common practice after every surgery, they do an antibiotic wash. After the mesh removal women are impacted with antibiotic soaked cloth into our vaginal canal too, in addition to IV antibiotics then RX antibiotics in pill form to continue at home.

    Reply

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