My testing update for my group members and readers

My testing update

As you know the last many months has been all about finding the sources to this severe periodic swelling I have had to my limbs which seems to be presenting about 40-60% of the time during a month period and is affecting mostly my legs and feet.

In the beginning the thought was first, it was linked to my Fibromyalgia....then they thought it must be related to R A, (Rheumatoid Arthritis) which along with Endo & Fibro, runs in the women of my family. Specialists (Rheumatologists) I had seen regarding these said Fibro does not cause swelling, it can cause puffiness, and though the fibro will greatly intensify the pain felt with this swelling, it could not be the cause of it. He did a blood test for RA; it did not show a rise in RA factor now, so that too was ruled out as the cause.

Next thought was Lymphedema, as I wrote here some time ago. I wrote about that test and how extremely painful it was, it still is shocking to me it could be so painful! I shared how in the end it said that my lymphatic flow was reduced, but not enough to be causing such severe swelling.

This was the point my Dr became allot more worried, the things that were left that could cause this swelling were things that needed to be addressed immediately. These being, blockages, clots, heart issues and tumors. Apparently there are tumours that grow on the Kidney and Liver that are famous for presenting these symptoms. I was booked for a number of tests and labs.

I had a C.A.T and M.R.I scan and was booked in for more Nuclear Imaging; the labs came back with nothing showing in my blood work, which was a relief as that helped rule out cancer causes for the most part.

Just this past week my C.A.T and M.R.I tests came back in.

These tests confirmed more complications being caused by my extensive pelvic adhesions. Apparently they have attached on to my renal artery leading into my kidney. I only have one kidney which we already knew for nuclear scanning in 2000 also had endo and adhesions attached to my ureters, and to a main artery. Since 2000 it seems this is now causing a strangulation of the renal artery which is causing severe restriction of blood flow to the kidney.

This restriction is affecting my blood flow and is causing circulation issues, which causes the pain and swelling in my lower limbs, and also would be the cause of the swelling to my hands.

There are a few big concerns that come with this D/x, the first being extra pressures placed on heart function, next is clot issues, this can cause clots to form that if released can cause stokes, heart attack, lung embolism and so forth. Another is extra strain placed on the kidney and damages that can be done to limbs that are not receiving adequate circulation. So that is the new diagnosis, though it is not the best news, it could have been worse, it could have been the tumor or any other number of issues, I don't like this one, but none the less, I now know what it is I have to contend with.

My new Prognosis;

Since I am in-operable due to the extensive, dense and calcified adhesions throughout my abdomen, surgeons will be very concerned about risking injury to major organs trying to cut through those adhesions to get to my renal artery. Surgeries to that artery at the best of time is a very tricky and risky venture, add to that bound organs, frozen pelvis and calcified adhesions and this relates to nothing less that a nightmare surgery with many known and unknown risks.

I am to see a vascular surgeon to discuss what should be done, we may have to wait until there is no longer time to wait....it may be safer to endure the pain and swelling than to risk further injury, hemorrhaging and so on. These are risks we will have to evaluate then.

The problems these adhesions from my 13 abdominal surgeries in the past never seem to stop coming up, just when one thinks it should be under control, as my last major surgery where they worked at cleaning some out was in 97.....since that time the 3 ab surgeries after has been an open and close affair as they not only could not cut through the calcified adhesions, they could no longer tell one organ from the other as they are bound in a large 'wasp nest' or 'cocooned' in these adhesions so when they go to cut they have no idea at all what lies under the scalpel.

In attempting any surgery surgeons risk cutting into anything lying beneath the adhesions and causing a life threatening event, or worse, damage may not even be known until it is too late, then fixing any damage is just as risky and can cause even further damage..... They have tried 3 times since 97 to try removing some of these adhesions, mostly to free my intestines and bowel areas that are being obstructed in a few areas and causing this extreme pain, elimination issues and the possibilities of full obstruction, strangulation or rupture.

Had anyone said to me there was such a possibility of going through these types of issues from adhesions from having abdominal surgeries to treat the pain of endo, I may have not listened to all these specialists who said they could help with my endo pain. I had no choices of having surgeries when it came to my ovarian cysts rupturing, and they did cause a certain amount of scarring on their own.... but a total of 13, 5 of which were to try and fix the damage caused by the previous 9, is FAR MORE than I bargained for.

Each surgery did so little to relive the pain, later when I asked why I was told it was b.c it is so deep seated in areas where it is too hard if not impossible to get to. Leaving any of it leaves the pain. Allot also had to do with the fact that endo implants create their own nerve supplies and each signal the brain that it is injured, thus the pain impulse is triggered, since all the surgeries I had in the beginning were all laser surgeries where they did nothing more than burn the 'tops' off the implants they found, it is no way effected the nerves underneath that were actually sending the pain signals. By the time science learned about the nerve supplies and that laser surgery was not the best thing they ever found, it was too late for me, the damages and the adhesion growth had been done. When ablation, excision surgery finally became the way to go, it was not a viable option for me as now they could not get to those areas b.c of the adhesions the wrong surgeries had caused, perhaps had I been lucky enough to have been able to have the right kind of surgeries from the start, my outcomes could have been allot different.

I will do a follow up once I have seen this vascular surgeon.

Be well, I wish you pain free days,
Loretta

To Lighten the mood, my picture of PLEASURE, My grand daughter enjoying her birthday cake.

Endometriosis Surgery

Click the large red font title 'Endometriosis Surgery' to view a laparscopic excision surgery. If for some reason that link doesn't work, try the enclosed URL.

Endometriosis Surgery

This is a video of excision surgery.

Suzanne's Story, Skin Endometriosis Part 3

Life with Endometriosis

****Please remember,this is part 3 of 3 video blogs, this blog page posts backwards, it is best to start at the bottom and work ones way up.



Here is the last video so far of Suzanne's journey with Endo, it is unfortunately not over for Suzanne, however she walks with grace through it and is proactive in her care, which is the key to good health care and management of this disease.

It seems our journey is never ending, but through education we can empower ourselves to move on in the best most positive light possible, I know few who are as brave as the women who live their lives in the often severe and debilitating pain of Endo and Fibro, my prayers forever with each one.

Again, here is our final video.

Thank you Suzanne

Life with Endometriosis


I want to thank you Suzanne for taking the time to tell your story, and thank you again for letting me offer it here to others seeking information.
The more we can offer, the more we can be proactive in our journey through Endo.

Loretta

Endo VIdeo From Suzanne, Part 2

Suzanne's Endo experience,
Part 2

Suzanne's Story, Skin Endometriosis

Life with Endometriosis


In keeping with offering other endo stories, I would like to offer this one.

I am pleased to bring you a story by a very close friend of mine, endo has a strange way of bringing things and people into your life you may never have met otherwise, if lucky, those people will change your life too, but in wonderful ways.

This has been my experience a few times now, I have met through either my support group or others, women who I would find similarity's with our stories, or just something in their posts that would draw me to them. It is a wonderful thing that has come out of this for me. I hope all of you struggling with these issues find a good group you feel comfortable with and find friends who will help you through.

Here is Suzanne, she was given endo by way of surgery, her story is on a few videos, I will post part one here, look for others as we go.

Thank you Suzanne

Another Endo story

Life with Endometriosis


A Different View

Hello again,

Part of this site will be devoted to sharing others stories, along with mine I hope to offer other points of views, experiences, types, locations, journeys, and treatments.

Endo is not a one size fits all disease, far from it, in fact experiences and pain can be completely different from one woman to the next, while one may have been diagnosed with stage 4 and have severe pain, another can have stage 1 and experience the same amount of pain.
On the other hand, one can have stage 4 and rarely feel any pain, I know of a woman who only learned she had endo while having a tubal ligation, she never felt anything more than uncomfortable periods during her whole life. Endo is as different for each person as the person themselves, there is no telling what ones experience will be, nor what treatment may help, what works well for one can have little or no effect on the other, it is a hit and miss game.

Endo has been found on many places in the body, it is rare but has also been found in men and newborn baby's, both male and female! It is found in the reproductive area, on the bladder, kidneys, bowel, intestines, vagina, cervix, skin, inside the uterine wall, (called Adenomyosis) ovaries, even on the lung although rare and rarer but none the less has been diagnosed in the brain. No one knows how endo ends up in these locations, I will get to theories in another post, to touch on it however are a couple of theories, one being that we are born with it there already, while in utero endometrium cells are misplaced into areas they shouldn't be. Another is called retrograde bleeding where as cells get backed up into the fallopian tubes while menstruation, these cells then implant and grow, then bleed in cycles as we do.
Yet another is these cells get carried through our lymphatic system and implant along the way, other causes may be environmental poisoning such as from Dioxins found in our tampons and pads, as well as disposable diapers....all of these I will touch on in a later post.

I hope you find these stories from other women's walk with endo informative and helpful to you.

Loretta

HEALTH ALERTS POSTS

As a part of my blogging I will be sharing many links and articles about health alerts, scams, reports and anything one should be aware of that effects us as women, and our families. I do allot of reading and come across many articles, I will try my best to make sure they come from valid sources, but please check into the authenticity for yourselves, it is best to be safe. If you find something I have posted here to be absolutely false, or you have further info, just leave it in the comments box, I would appreciate taking a look at them. I hope you find this interesting and helpful. Loretta