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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Update….Helped one Condition….Hurt the other :(

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Life has been really interesting since my last post. I’ve been somewhat stressed to the point where I wasn’t letting anyone in. I felt as if I was losing grasp on everything and chose to take some time to regroup.

In the midst of this time I had the most unnerving experience. The pic above is my left foot. As you can see the veins are all popping. Truth be told this is minimal to what actually took place.

I could see all my veins right up my calves, up my legs and across my pelvis. When I saw this happening I knew that those inside my pelvis must be huge! That’s not all, I was in the most incredible pain I have had since having surgery.

Apparently, dealing with the Endometriosis has caused me some issues with the Pelvic Congestion Syndrome ;(

The adhesions which has everything in my pelvis stuck together and were causing me intense pain were also holding the veins in my pelvis (like bands) and constricting them/ restricting the amount of blood that could flow into them. Removing the adhesions has helped to reduce the sharp everyday pain that I was experiencing but has also freed the veins and they now exist without constriction.

Therefore, the veins can now have the maximum amount of blood pooled inside- thanks to the faulty valves…….

Doc says I have to return to the Daflon- meds for  venous conditions; in order to work on the veins all together and reduce the varicosities.  I most likely will have to wear prescription grade compression stockings everyday to work as well. Doc says the maternity ones that will come right up to just below my breasts 😦

So it truly is like a Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back. I had an intervention to help in one area but because that area was the focus and not all two, that intervention has created an issue with the second area. We worked on the Endometriosis and now the Pelvic Congestion Syndrome is in full swing.

What now? More research- I’ve been doing quite a bit and will share in my next post; more treatment; more medication; more trial and error?

I guess this is what happens when we treat one when there are two to be considered.

Thankfully, my time of reflection has placed me in a pretty good frame of mind. I’m in a good space right now. Hopefully, it will last.

Truth is, it could be worse……….so much worse.

I remain thankful for each blessing amid this storm.

 

Mandatory Sensitivity Training?

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Even as I type this title I am wondering why is it that people even need sensitivity training? What happened to our ability to empathize and treat people how we would want to be treated? What happened to thinking before we speak?

So, as you know I applied to a Doctor of Psychology programme and was accepted. I had originally set my start date to July 1, 2017 but due to everything that has transpired over the past few weeks/ 2 months I started to rethink that date. I though about it from the financial standpoint, since I just had surgery and will be doing a few courses of treatment over the next months. I also thought that as excited as I am to study again I need to take care of my emotional health as well before I launch into that.

Bearing this in mind I emailed my academic advisor and queried  deferring the start date of the programme and how exactly that could be done. I have yet to decide if I am going to push back to 2018 or attempt to start later this year. 2018 seems more logical at this stage.

I also queried if the university had any measures in place for chronically ill students or those who suffered from chronic pain. I just wanted to know; I like to have all the information together so that I can make an informed decision.

Anyway, she responded giving me various contacts to check for direct answers to my queries, including the university Registrar and Finance Department. She also informed me that I had been assigned a new advisor and she would be contacting me soon.

So, this new adviser contacted me shortly thereafter and the email went like this:

“Hi Lyn, I am Jane Doe your new academic advisor. I have read the email you sent to X and I think you should cancel your enrollment with the university. You seem to have a lot going on.” ;(

I was livid. I did not read anything beyond this point and I hit reply immediately. I just could not let this go. How dare she recommend that I drop out because of all the stuff I had going on? What had me even more upset was that she and I had never spoken or had any conversation, even via email, up to this point. I basically told her I didn’t understand how the response to my queries could be cancelling enrollment and from someone who has taken no time whatsoever to know anything about me beyond my name on a file at the university. I asked her what gave her the right to make any recommendation to me furthermore that one.

I then took the phone and called the university and spoke to her directly, I let her have it. I had to inform her that she was out of place as far as I was concerned and could benefit from sensitivity training. How would she feel if she was dealing with an illness that is impacting her ability to study as she wished and she was trying to find the best course of action and someone she had never interacted with told her to quit……..well then added on after saying quit………..until things have settled down a bit.

I also informed her that there will always be something going on, there will always be something to push through. If I quit at the slightest pain or struggle I will never get anywhere.

After I had said all I needed to say, she apologized profusely. Truth be told, I didn’t care for her apology. It meant nothing to me. …………This is why we have to be careful what we say to people. Once the damage is done the words cannot be unsaid and apologies do not cover the scars.

I requested a different academic advisor…..she and I will not do.

What is it that makes chronic pain/ illness synonymous with inability in some people’s minds? Why do we have to keep fighting to prove to people that we can do, be, learn, produce etc. just as well or better than those who may not have our struggle? Our process may be different and our path may have a few more twists and turns than others but we will get there.

I wish people understood the impact that their words spoken in ignorance have on others. If I was not as strong a girl as I am I probably would have cancelled my enrollment or at the very least been upset and said nothing about it.

Its about time that people learn how to relate to others. I thought it was something that came naturally to us humans but apparently it is not. People working in positions where they interface with the public and definitely in positions where their opinion has some bearing on decisions made should have sensitivity training.If it is already a part of them, great they will just be reminded. However, if it is not- as in the case of the advisor- they will do well to learn.

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Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back

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Chronic Illness can be like a see saw. Just like the one in the photo above. Sometimes the thing that makes the difference between whether there is progression or regression can seem so small but yet so big at the same time.

Years ago in Barbados there was a Soca song that was written to describe the government………..I think it was…………most songs written are about some social issue.

Anyway, today as I was thinking about the effects of being ill, besides the image of the see-saw with the slightest thing tipping the balance, that song came back to my mind. Its called “Breakdown” by Serenader.

The chorus of the song goes:

One step forward

And two steps backward

And tremble

Hold ya belly and tremble

 

How apt.

I feel like I take one step forward and then two back. Just when I think I am improving something happens that pushes me back again. This thing that occurs is not always physical, it could be a simple as a comment made by someone.

I misplaced an item, truth be told I have no idea where it is. It is not something that I would not place in a secure location……this just adds to the frustration.

I asked the one other person who could possibly have it to check through her things just in case. Her response was quick and sharp………….you are supposed to have that not me! I just left off what came before that statement.

My immediate thought was ” I really have to explain to this woman again………..sigh!”

When you don’t experience brain fog it can be the most difficult thing to understand. When you do, it can be the most difficult thing to explain.

I searched and searched every possible place that it can be in my home and I have not found it. All the while I am thinking to myself ” gosh girl, you really losing it”. The “it” there being my mind and not the item.

I really felt horrible………….I really feel horrible but there is nothing I can do about it now.

You may ask if something so slight can have such a devastating impact? The answer is definitely yes.

Its such a delicate dance from day to day to be in good spirits even amidst the physical challenges. Sometimes staying in that space is exhausting all by itself. Little things can seem like failures or statements of inadequacy and inability. Little things can make you question whether you should even try to do or to be sometimes. The slightest thing can lead to regression.

So when you take one step forward, then two back…………what’s left to do? Hold ya belly and tremble? Or just breakdown?

I don’t have the answer. It can be any or all. However, for me…I just keep on stepping and trying to maintain this delicate balance.

Angry Bowels- IBS?

She's just discovered her IBS isn't caused by chocolate!

My toilet and I have become close friends :(.

Closer than I ever thought imaginable.

Last post I looked at The Measure of Success. That was focused on determining whether the surgery had been successful or not and how that determination would be made. I said then that its not as simple as pain/ no pain. Boy, was that ever true?

So I had the pelvic issues I mentioned with the shooting pains and cramping. Then I started to develop some abdominal ones as well. I was moving between diarrhea and constipation and things just would not settle down.

Then came the gas and intense abdominal cramping. As you may imagine the pelvic stuff and this on top didn’t make for a happy camper. I was literally bent over in pain.

I found myself on the toilet trembling, with dark eyes and just trying not to scream. Yet what felt like constipation wasn’t and what may have presented as diarrhea was not necessarily the case either. What on earth was going on with me?

So, the good doctor and I had one of our conversations and he suggested that I use Buscopan. I had used it previous to the op for just two days when I was having abdominal cramping after BMs. This pain though was times worse.

I did as advised and the meds did help tremendously but I found the pain would return depending on what I ate.

Being the good research student that I am I started to look for possible causes. The symptoms I experienced all pointed to Irritable Bowel Syndrome. I was not satisfied with this and dug deeper. I discovered loads of threads, blog posts and research papers about IBS developing after abdominal surgery and laparoscopic pelvic surgery ;( There was also some research stating that IBS symptoms are sometimes confused with bowel endometriosis. Hmmmmm.

WOW!

Maybe, my body is just angry for being invaded and manipulated 🙂

I started reading many of the comments and experiences of the women involved and then I stopped……………it was not very encouraging. Many of them stated that the problems have persisted for years.

I chose to look at how my diet could be modified to help me. I discovered quickly that certain things had to be cut from my diet immediately. Each time I ate the item I found within 1/2 hour the cramps and rumblings would start. I have cut greasy foods, pepper, cheese (didn’t eat much of this anyway…like once every few months), lentils and channa (ate loads of these though) and citrus fruit thus far. Many of the other recommended changes I already had within my diet e.g brown rice only, gluten free, no dairy, minimal animal protein and no fried/ processed foods.

I have also taken to drinking tea………..in Barbados we call any hot beverage tea, regardless of chocolate, cocoa, green tea, black tea…………I have taken to drinking herbal tea everyday. I drank herbal tea before just not often. Well I’ve been drinking it at least 2x a day recently. I have also cut the portions I eat. I now strive towards 5 small vs 3 large meals and take the time to eat in an unhurried setting and manner…………making sure to chew my foods well.

This also means that I cannot purchase any meals but must ensure I prepare and travel with what I am to eat. This is not really an issue, I usually do this most days. I will just have to cut out the once in a blue moon purchases.

These changes have helped significantly! I have little to no IBS like pain once I follow these diet rules well. If I slip up, even a little, in 1/2 hour my body and I start to fight.

So, is this permanent? Lord knows because I don’t. All I can say right now is that I keep on moving forward. Test, adjust and step. I continue to deal with it one day at a time.

 

 

 

The Measure of Success

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How do we measure success? How do I measure the success of the surgery? Is it an all or nothing thing?

This morning I awoke feeling crampy and aching all over. I’ve got pain on the right just around the ovary and my brain is kinda fuzzy. Feels like PMS………well in my case PNothingS. Great! Just wonderful!

Honestly, from Friday I was feeling like my hormones were getting wacky. I decided to adopt a wait and see attitude. I don’t know about others but after gynae surgery my cycling goes haywire and takes some time to settle down. According to my charting before the op, I should have ovulated last week. Obviously with all the organ handling, separating and removal on May 10, I was still in post op pain and mode last week. I now need to start charting again to establish what the cycle will be.

So, what does this pain today mean? As I am writing here I have already taken some meds and the pain is between 6 and 7…………livable/ doable. Does this mean that the surgery was not successful?

I think its too early to even think that. Things need to heal first before I can truly assess the pain. Even then, if the pain levels are still as they were before does that mean no success?

I’ve thought about this, spent a lot of time on it actually. I would say no; success is not as cut and dry as pain before surgery/ no pain after surgery OR horrible pain before surgery/ less pain after surgery. I think I should look at the little things, small progresses made and see how they add up as opposed to looking for the drastic change.

So far I’ve noted success in:

  • Bowel function- I can have a BM now without intense pain, stretching and cramping and having to move from bathroom to bed and stay there for at least half an hour before I go anywhere or do anything.
  • Sleep- I am sleeping more now that being awake throughout the night from pain. I still need to wake up to empty my bladder but for the most part I can sleep.
  • All day pain- previous to the surgery I was in pain all day long. Up until today that was not the case since the op. There is pain yes but not consistently throughout the day. It will take me some weeks to work through what is happening now and see if the pain has reverted to mainly cyclical and minimal in between.
  • Mental State- the impact that chronic pain has on mental health should never be discounted. Previous to the surgery, the flare I was in had lasted so long that I was really down in the dumps. I smiled and did what I had to/ what I could to fulfill my various roles but beneath it all I was seriously struggling mentally. Right now I am in a better mental space. Partly because of the improvements  I mentioned above and also because I was able to get some questions answered by having the procedure i.e what was stuck to what, where the growths were etc. So no matter what happens going forward at least I start from a more stable space.

Each of these things is major in its own right. Each one was a source of worry for me before the op and contributed to my overall disposition. The improvement equals success to me. I claim the small victories.

If we continue to look for the big earth shattering changes, most times we miss the small but significant ones.

Yes, I’m in pain today. It may continue for a few hours or a few days I have no idea. What’s good though is that I am in a better place to deal with it now. That’s success.

As the quote above says, this is a storm that I am in. I don’t know how I get through most times (actually I do………it’s all God) and I have no idea if it is over or when it will be over. However, the one thing I do know is that when it is over/ when it wanes before picking up again I can see my growth. I can see how I have developed and how I have become stronger. The person I was going in is not the same person coming out.

This to me is success!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Post-Op Visit

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I went for my post op check on Friday. I spent quite a bit of time talking with the doctor.

First, my pathology report was back. Remember the unidentified deposits? Well biopsy confirmed Endometriosis. Not sure why those looked different to all the other identified Endo and apparently all that he had ever seen in the many years of practice. Anyway, no surprises there, right?

The incisions are all healing well, save one hard tender lump next to the navel incision which I was just told to watch and see. It could be an infection; could be blood/ pus gathering beneath the surface; could be sutures beneath the surface; part of the body’s natural healing process or just as a result of the trauma from the laparascope. I did my own research and all that is correct………….if it starts to ooze or gets bigger then antibiotics, if not it will resolve on its own.

Doc suggested that I wait a few weeks to gauge the success of the surgery and the extent of my pain and then if its as it was before we try Zoladex. Now I’ve used GNRh agonists before and I can’t say that we are on friendly terms. These medicines basically shut down the ovaries and put you in a state or menopause…….with all of its wonderful gifts.

After the hysterectomy, my ovaries were in shock for a while. I had hot flashes and night sweats galore. I also had some of the vaginal dryness (dry doesn’t quite cover it. It was like walking with sandpaper between my legs) 😦

Doc says I will have “add back” estrogen as well. This is apparently to protect against osteoporosis and all the other issues that come from shutting down the ovaries. For me this is tricky because Endo is estrogen dependent so it will be a delicate dance.

The other thing is that we still need to treat the Pelvic Congestion Syndrome. This I have to discuss on my next visit as well. Since I have both things I need to work on them both or I will be getting nowhere.

The PCS is responsible for the physical heaviness, dull aching pains, challenges with standing and walking etc for a long time, increased fatigue as the day progresses and the lower back and leg pains. The Endometriosis is more the sharp and intense pains and cramps that are more cyclical. They both cause bloating, problems with bladder and bowel, painful intercourse/ after intercourse pain, nausea and vomiting, brain fog, depression and so many other things.

Truth is in the midst of the pain I don’t sit and separate one from the other. They both hurt and affect my day to day, period!

So they both need to be treated.

We will probably have to continue the PCS treatment from the venous angle using the medication to shrink the varicosities, which should in effect reduce the level of congestion.

Yes, so much more research to do and so many more battles to fight. We do what we must; this is my life…………no one better to fight for it but me right?