Pelvic Congestion Syndrome Research

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So I’ve been reading a lot of journal articles recently. I have stated before that one of the reasons I started this blog was to discover what other women were experiencing with PCS. I also want to keep track of what the medical fraternity is saying about it.

Last blog I wrote how having the surgery Update….Helped one Condition….Hurt the other  (

I spoke there about the challenges with my veins that I have been having since the op. The pics above explain what happens wen there is a diagnosis of Chronic Venous Insufficiency. Pelvic Congestion Syndrome is also known as Pelvic Venous Insufficiency/ Pelvic Venous Congestion. I guess if they can’t settle on a name that says something about how far the research has gotten 😦

In seeking to learn about the compression stockings and the issues others here face I had a conversation with a relative, this was after being in the same location and having to get some meds from her because my veins were popping again and the pain was starting to increase.

What was most interesting to hear, after the information about the stockings, was that years ago an OBGYN had said to her that she will probably have to wear stockings. That was the extent of the conversation. The doctor at the time gave no further information, no explanations; basically offered nothing. She believes that if she had been informed back then the situation would not be as dire now. Her diagnosis is Chronic Venous Insufficiency. Her issues are localized within her legs; while mine are pelvic  and only spill over into legs hmmmmmmmm.

This makes me wonder though, actually it makes me angry. Some doctors are just not worth the title.

My research has revealed a few things. Women who have or have had the following are more likely to develop Pelvic Congestion Syndrome. Of course there are always the exceptions. Note also that the number of studies done are so few that this information cannot be considered conclusive from a research methodology standpoint.

  • More than one child: they say this has to do with the veins being stretched by the weight of the baby through multiple pregnancies. Yes I know some women have never been pregnant and still have the condition. There also seems to be a genetic link in some cases. Maybe mothers just thought their issues were normal and never sought to investigate.
  • IUD: This has to do with the impact having a foreign object in the body for the extended period of time has and the changes that take place in the body as a result. I don’t fully understand from a scientific standpoint – really was never good at pure science- but I am told it leads to blockages and blood not being able to flow freely.
  • Tubal Ligation: Cutting/burning/ tying the Fallopian tubes clearly leads to a blockage and departure from the natural processes. This also leads to blood being rerouted and affects the flow- well at least in the most natural way.
  • Hysterectomy: Removal of the uterus and other organs- depending on the type of hysterectomy- again causes several blockages. All the arteries and veins that fed the uterus need to be blocked off because the organ is no longer present. Therefore, with hormonal changes, the blood still rushes into the pelvis but one major outlet – menstruation- is gone. Hence there is increased congestion in an already tiny space.
  • Anorgasmia: This is an inability to reach orgasm or coming to the point of orgasm without achieving it. There are women who for whatever reason will engage in sexual activity and intercourse but choose to avoid the orgasm e.g could be fear of  the level of pain. I think I wrote about this in Sex………Love to Hate to Love It!!! There are also others who have never orgasmed or were previously able to orgasm but no longer can as a result of illness/ emotional issues.

Whatever the reason, by choice or involuntary,  this also leads to increased pressure           within the veins and pelvis and no outlet for it.

The studies that I read indicated all of the above either individually or jointly as risk factors to developing Pelvic Congestion Syndrome. I have had/ done/ used the first 4 and intentionally on occasion done the last one. Seems my situation is the perfect PCS storm 😉

Looking back, an IUD seemed like a good contraceptive method after I had my first child; after the second child a Tubal Ligation was a good decision since my family was complete and I definitely did not want any more children and the hysterectomy was the best treatment decision for the issues I was facing.

If I knew then what I know now, would I make the same decisions? Absolutely not!

That’s the thing about hindsight- its perfect vision 😦  I will not be angry or regretful about those decisions though. I always believe that once we did the best we could at the time with the information at hand, we should have no regrets.  Or at the very least, we should not live in the regret; acknowledge it and move on.

So, that I have done. I move on. I cannot reverse time and make different decisions. However, my knowledge now can help someone else.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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30 Day Chronic Illness Challenge- Day 6

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If you could have told yourself something when you first remember these symptoms arising, what would you have said?

Thinking about this question the first thing that came to mind was “this is not normal”.

Growing up I was made to believe that women endured pain. It was just the norm. So when I started my period and was in pain I just said to myself “suck it up, this is how it is, all the women in the world do this”. I really told myself that. I convinced myself that I was the problem as opposed to there being a problem.

So if I could go back I would say from the get go, this is not normal.

The quote above really speaks to me ……crippling pelvic pain is unacceptable, yet we have made it normal to the point where girls are afraid to say they are in pain because it somehow means them inadequate.

Its time we said no………it doesn’t have to be like this.

I would’ve told myself to fight, don’t keep silent because this isn’t normal!

Sex………Love to Hate to Love It!!!

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Firstly, let me qualify what I mean when I say sex. I will use the official medical language since whenever I say sex my doctor says “intercourse”. So, yes I mean intercourse.

I’m 38 and I have in many ways just discovered my vagina. I always knew where it was and what it did. I pushed two children through it and obviously would have been having sex for years. What I mean though is I have finally come into my own and am comfortable with the body I have; scars, fat areas, soft areas etc.

I can give myself freely without reservation and inhibition, without hiding any aspect of me. I can have intercourse with all the lights on and no covers and be uninhibited. In lots of ways this is liberating. Many of us women struggle to be here. I’m happy that I have arrived.

My reality of sex though is in many ways directly opposing the above.

For many years sex has been a delicate dance between levels of pain, hormonal stage, energy levels, positioning, interest, fears, doctor’s instructions and desires. So much for spontaneity!

Sometimes, in my mind its “why bother”. Other times its “am I prepared to deal with the pain” Reality is that every-time I have intercourse I risk having pain. Pain that will knock me off my feet and “cripple” me for a few hours at least.  At most I could have pain for days.

So there’s no quickie before work and out the door or lunchtime and back to work in my life. I accept that I must ensure there are a few hours at least between the time it’s over and when I am required to do anything else.

Doc says “preparation is key”; so just as I have meds within arms reach when in bed in the event that I awake in pain, I have to prepare for sex.  In theory this is possible, I can pre-medicate ( take some pain meds about half hour before I plan to have sex so that by the time we’re through the levels of meds in my system are high). This as I said is theory because arousal is not dependent on plans.

Yes I have little people in my house so there is some measure of planning or rather waiting till they are asleep, downstairs, occupied, away etc. but still all can’t be scheduled.

It is what it is yes!

Let me separate the pain into two categories. Firstly, is the pain as a result of the Pelvic Congestion Syndrome. This is for the most part pain that I experience after intercourse. It correlates with the level of the pleasure I derive i.e more pleasure….more intense pain. I don’t know if this is a researched and scientific finding (probably not since research on PCS is greatly lacking) but it’s been my finding.

This is akin to the pain I experience after exercise or other physical activity. After the endorphin and adrenaline levels drop I feel the pain intensely. Added to this though is pain as a result of vaginal penetration, I can’t quite quantify this pain but I have found that anything inside leads to pain after e.g after the internal ultrasound there was pain for days. Obviously, an internal exam or ultrasound does not compare to the penetration, movement etc. of intercourse.

So it’s those two combined.

The second category of pain is recent and as a result of the cysts and adhesions I believe. This is pain during intercourse. This is instantly sharp and potentially “crippling”. Just as with an internal examination the doctor applies pressure to feel ovaries etc. and it hurts………..same thing. With some care and positioning adjustments this can be minimized.

So two categories of pain.

 

Did I mention that I do love sex?

 

A friend told me once  “hands are for release, mouths are for pleasure, inside is spiritual”.

These 11 words ring true to my experience as well.  I do believe that there is a spiritual and psychological  component to intercourse that many overlook and at times deny. So yes, the physical need can be met otherwise but there’s more to it than physical release or pleasure.

My marriage is not made or broken by the amount or frequency of intercourse. However, intercourse is an integral part. There is the physical need to be met but there is a much deeper connection that I find lacking the longer we go without.

Side bar: My husband is an amazingly patient and understanding man. I praise God for him each day. I know that some of my sisters are not so blessed and I pray for them because many men do not handle this situation with grace.

So in spite and despite the knowledge and expectation of pain.  Even outside the pleasure I have learnt to derive and give through intercourse. I seek that deep, spiritual connection.  I continue in the midst of the pain believing that one day things will improve.

I will be able to say:

Sex………………..Love to Love It!

Something else is wrong????

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The level of pain had not shifted from 8-10 for 2 straight weeks. I was going crazy…..I concluded something else had to be wrong.

After my “near death” experience as it is labeled in my mind, I was at home because I really could not work. I’ve been doing the minimum for a while now. I accept that I will win no awards for the cleanest or tidiest house EVER in my life. My reality some days is to just make sure we have all eaten something and had at least one shower. That’s how it is living in pain. All the unimportant stuff just drifts away.

The doc said he was concerned that something else was going on because at least the levels would drop between cycle and ovulation a bit. I would get a break (use that word loosely, but it won’t stay at 10). So we decided on an ultrasound- abdomen and pelvis.

I went off to have the scan done, thinking …something will show up…..and it did. So apparently I have hemorrhaging, blood filled, cysts in both ovaries. Along with these I have adhesions on the right ovary.

Let’s take a side bar and talk about this right ovary for a moment.

So I had the hysterectomy and because I am so young my ovaries were left intact. My body reacts as though everything is still there, hormonal cycles etc have not changed. I can clearly feel ovulation and cycle time. Together those are pain times.

The right ovary has always been more painful. While I do get some relief on the left side there is ALWAYS pain on the right and in the ovary. Always…..So at the worse of the worse the pain on the right is down the leg and spread across the back….more intense than anything on the left.

The previous ultrasound before the one I did a few weeks ago the right ovary was 13 cm across while the left was 5 cm across. It has always been a problem so I was not surprised.

So back to these cysts and adhesions.

Obviously, both ovaries were huge….as ovaries go…and I need to do something about them.

I don’t know if the internal scan aggravated things but the pain since the scan has been in my face. I am aware of it with every step I take. I have come to loathe stair and inclines; I can stand for 15 minutes tops and sitting and lying down hurt. I am back to propping with pillows at night just to find a comfortable position and sitting using both the donut and back rest.

So now I am staring surgery #8 in the face……….I am not happy about this but it has to be done. Things have to be unstuck and cysts removed. Actually, I would like them to ignore the fact that I am not yet 40 and just remove the ovaries. Its too many years of problems with them…..endometriosis, estrogen dominance, PCS…its time they go I believe. That’s just my lay person take on it.

This new challenge along with all the pelvic congestion stuff- I still get tired as the day progresses, tummy still expands in afternoon, still have the heaviness and weight etc etc- has made life over the past few weeks not great. I haven’t given up but I’ve definitely slowed even more.

I would like to do the holidays before I subject my family to the hospital run and recovery-

I am hopeful I will get my wish. However, even before the type of surgery is determined I have to rule out cancer they say…………..

I did the tests………now I wait on results.

 

Storm Warning

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People rush like crazy to the supermarket to stock up on canned foods, batteries, torches, water. Others jump in their cars and drive to the service station to fill their tanks with gas. A storm warning has been announced, people mobilize to do all the things they should’ve before hurricane season started, they rush to secure homes and life.Then we all sit and wait.

The rain begins to fall, the sky grows dark, there’s an eerie silence. The island is locked down and people wait in anticipation of the worst but hope for the best. Whatever comes, rain, thunder, lightning, flooding, fallen trees, damaged property, we will survive; we are prepared and we have support.

What do we do when the storm is not literal? What do we do when there is no warning? How do we prepare in that situation? What if there’s no support?

Illness is like that. A storm without warning, clear blue skies like in the picture above and then clouds just move in.  Even if we could prepare , no one knows what we are preparing for. Even if there’s support, we are all flying blind.

Just as with the literal storm, even if we prepare as best we could there’s no way of knowing what would happen. We can never know if the situation would turn out worse than we anticipated.

After, years of medical procedures, tests and medications; I thought I was prepared for the storm. After all I had been through some before. I had survived so whatever came I would just handle as before.

I’ve never been so wrong! Nothing could have prepared me for this life. Nothing I read, nothing the doctor said; prepared me for this reality.

 

Junkie????

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I stumbled out of the car, my hands trembling, sweating profusely, up to the pharmacy door. I opened the door with my last ounce of energy and walked up to the counter. As his eyes met mine the pharmacist said “Lyn you look horrible, all the pain meds gone?”

In my head I was screaming “give me them, give me them, I need them NOW!” Of course in reality I said “yes” and handed over the prescription. I asked for the gravol first, opened the refrigerator and took out a bottled water, popped the cap and downed that one tablet as he prepared the Tramadol. 10 minutes later I swallowed the Tramadol and prayed it would kick in quickly. Another 20 minutes and I felt the edge get knocked off the pain and I sighed…..thank God for pain meds!

Relating this experience to my doctor he said to me :that’s drug addict behviour”; in that moment I thought “its official you are now a junkie”.

Is there a categorizing system for junkies? Are you a particular type of junkie when you need the drug for pain relief as opposed to achieve a high? I wonder. I take this medication because I have to that’s the only reason. If I can stay in bed and not have to get out for the entire day I will opt to stay in and not take the medication. Realistically though, that is not an option on most days. I don’t like the way I feel when I am taking the Tramadol but I hate the pain even more.

I used to be able to take NSAIDs (non-steroidal anti-inflammatory drugs) like Voltaren. Cataflam, Acteric, Vimovo and Baralgin. Layering the NSAID with the Tramadol worked and worked well for me. I went skipping through the day. Then I developed an allergy to that brand of meds so here I am. All I have left is Tramadol.

So am I a junkie? Or am I just a prescription medication for pain management dependent individual?

When I hear the word junkie do I picture myself or well dressed middle class working professionals? Most times we think of persons using illegal drugs and who look strung out and unkempt. I am definitely not like that; but on those bad days I need the drug like I need to breathe. Maybe its a thin line I’m walking; maybe another topic for therapy; maybe I don’t know; maybe I don’t care.

This I know, I am doing the best I can with a messed up situation. My best right now requires Tramadol; I wish it didn’t but it does. That’s the reality. Such is my life.

So if you look at me and call me a junkie that’s OK, you are entitled to your opinion. I’m just a girl doing all I can to survive……one day at a time.

Donut: My Self-Esteem Builder

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I work in a school and every day I do sessions with groups on self-esteem building and how to have positive self esteem etc…I talk all about affirmations and looking for the positives and celebrating your achievements and so many other things. All that I say is true but nothing prepares you for having an appendage, or apparatus that will draw attention to you and the questions and stares…….great self esteem and resolve test. Initially, I laughed inside because I knew I was failing big time!

These veins that I have on the inside of my body sometimes manifest themselves as hemorrhoids, well actually one hemorrhoid. From my research hemorrhoids are basically veins that are stretched and malfunctioning. Mine are caused by the faulty valves; so just another type of varicosity.

If you have ever had a hemorrhoid you know how painful it can become, itching and burning and just causing misery. I used to sit on the bias (diagonal ) so that I would avoid sitting squarely in the chair. The harder the surface on which I sat the more pain I would encounter. I found that even when I was not experiencing any hemorrhoid pain I would have increased pressure in my pelvis with sitting; especially on a hard surface. One day the doctor said “you should get a donut”. Ok I thought I will do that.

Initially I searched online and in rehab supply stores here and as I researched I decided that I would make my own. My donut looks nothing like the one in the photo. Yes it is the same shape but mine is covered in bright multicolored African print fabric with  an accent piece in another color. I would take a pic and post but right this minute its in the car and that is just too far away.

So I made it and from day one as I sat on it I found instant relief. It was a breath of fresh air. When the hemorrhoid was problematic it helped because that part of my bottom was not in contact with the chair. Outside of the hemorrhoid it shifts the pressure in my pelvis and eases the weight considerably, in turn easing the pain. I usually can’t/ don’t sit for more than 1/2 hour without standing and walking for a few minutes, if I have to though, Once I have the donut its ok.

Initially, I walked with the cushion in a bag. When I took it out to sit on people would stare, to the point where they lost focus on what they were doing. Then the comments began. Never questions but comments. “The last time I had one of those I was having baby”; “Oh you have a pretty donut cushion!”; “Look she is sitting on a donut, wonder what happened with her?”

Remember, I spoke about the expanding abdomen? Well some people actually stood and focused their attention on my stomach. Yet, nobody was bold enough to ask me any direct questions.

Now as strong an individual as I am and as self assured as I know myself to be; the days when the pain is at its worse and I am relying on medication are days when I feel least sure of myself. I feel ugly and unattractive. Every negative thing that I can find about myself is magnified tenfold. My hair doesn’t look how I want it to; my face has pimples; my clothes don’t fit well; I’m miserable. On a rational and objective level I know its the pain and at times hormones that are clouding my judgement. I know I’m beautiful and looking great in my clothes. I know I am quite attractive and my face regardless of one pimple or many is appealing…..the problem is I don’t feel that way.

In these moments of pain, psychology would say my right brain takes over, all the emotions rule my thoughts, facts and what is real are shoved in the background. I’m vulnerable. On some of these days I’ve thought ” I can’t deal with the stares and the comments today, I should just leave the cushion in the car”. I almost did on occasion. Then I said ” girl you don’t owe explanations to anyone”. I had to come to accepting for myself that this is my reality now. I need the cushion, hemorrhoid or not. Its about comfort and its about health.

I decided to make a few more and have them as accessories to my clothing. Haven’t gotten around to it as yet but I will. I accept the way things are for now. They may change for better or for worse. Whatever comes I will handle. There will always be those days but I will continue to use my donut;I will continue to build my self esteem!