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Pelvic Congestion Syndrome – What is it?

06 Dec 13
Megan
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I recently realised I’ve focussed a lot on the ME/CFS and Chronic Pain aspects of my illness and have been completely ignoring the one diagnosis that most of you probably haven’t even heard of; Pelvic Congestion Syndrome (PCS).

So I thought I should do a post on what PCS actually is and how it affects me.

PCS is a medical condition that usually affects women who have not yet reached menapause and have had multiple children. My situation, where I haven’t yet had any children, is according to my gynaecologist, rare.

What happens when you have PCS is that the veins within the pelvic area (usually around the ovaries and uterus) become enlarged causing varicose veins. These veins fill with blood over the course of a day causing an increase in pelvic pain as the day goes on.

Here are a few sites that I feel explain this well:

What is Pelvic Congestion SyndromeΒ (wisegeek.com)

Pelvic Pain (Pelvic Congestion Syndrome) (hopkinsmedicine.org)

Pelvic Congestion SyndromeΒ (veindirectory.org)

How PCS affects me

In my case, the varicose veins are all around my uterus. They cause a constant dull ache in my stomach with pain increasing during the day to become sharp stabbing pains by late afternoon.

As with my other chronic pain, the pain caused by PCS, increases 10 fold during my period. For this reason, my gynaecologist has me trialling hormonal birth control to control the pain. We began with trying several different pills which all caused constant nausea and breast pain and didn’t seem to reduce the pelvic pain by much at all, so they were stopped.

Right now we are trialling Depo Provera. Again this seems to be causing almost constant nausea but I have less breast pain and, because it has stopped my period completely, it appears to have lessened the likelihood of an increase in pain at certain times of the month. I still have times when the pain does increase but I don’t know if that is a hormonal thing or not. I have also been having hot flushes quite regularly since getting the injection which I really don’t like. Unfortunately, because it is an injection, I have to wait the 3 months for it to wear off before the side affects should stop. I will be returning to my gynaecologist in February when I’m due for the next shot, but before getting it I think I will go through all these side affects and see what he has to say.

The problem for me is that because I haven’t already had children, it’s been recommended that I don’t attempt embolisation or any other surgical treatments for this pain at this time as they could impact on my fertility. As I’ve previously mentioned, having children is an important part of my future that I do not want to give up so in my mind these treatments are not an option at this stage. As it is I’m concerned of the long term affects of the Depo Provera on my fertility.

If the Depo Provera is a no go at my next appointment, I really don’t know what the next step will be as my gynaecologist has said this was the last treatment he could think of trying. I may just have to deal with the pain naturally for a while until we have children.

No Comments

  1. jmlol December 6, 2013 at 9:42 am

    Depo can effect fertility and usually takes months to dissipate. Have you tried the nuva ring or patches?

    • Megan S December 6, 2013 at 11:30 am

      I know! That’s what I’m worried about. I seem to react badly to the hormones used in the nuva ring and patches πŸ™

      • jmlol December 6, 2013 at 12:07 pm

        Me and BC don’t get along either. It took 17 months to get preg after depo for me.

        • Megan S December 6, 2013 at 1:40 pm

          That’s what I’m worried about!

      • jmlol December 6, 2013 at 12:08 pm

        They do have an iron iud, but i don’t know if that’d help

        • Megan S December 6, 2013 at 1:41 pm

          I know the one you’re talking about and I’d looked into it but the thing that apparently helps is the hormones so it’s a no go and apparently could make it worse πŸ™

      • jmlol December 6, 2013 at 12:08 pm

        I mean copper, not iron.

        • Megan S December 6, 2013 at 1:41 pm

          πŸ˜‰

  2. Toni December 6, 2013 at 10:31 am

    That sounds like misery on top of misery. I hope your doctor can find another treatment for you. If he can’t, a different doctor may. Don’t give up.

    • Megan S December 6, 2013 at 11:31 am

      Thank you Toni. I’ll definitely be looking for another doctor if he can’t help!

  3. Trisha December 6, 2013 at 12:12 pm

    That sounds so painful. I don’t blame you for not wanting to try to the surgical options. I wouldn’t either, if I didn’t have kids yet. I’d heard PCS mentioned but I didn’t understand exactly what it was. Thank you for explaining. I sure hope someone can come up with a treatment that you can tolerate.

    • Megan S December 6, 2013 at 1:42 pm

      Thanks Trisha I appreciate your support.

  4. Just Another F-Bomb December 6, 2013 at 11:17 pm

    This is the first I’ve heard of PCS, I had miserable periods before pregnancies but I can’t imagine having this type of pain all the time. Hoping the Depo is a winner for you. Does ginger help with the nause?

    • Megan S December 8, 2013 at 12:57 pm

      Thanks πŸ™‚ Ginger helps a little but it’s still constantly there.

  5. thebetterwaycfs December 7, 2013 at 12:10 am

    Ah good luck! The nuva ring also did not work for me! I have PCOS so have been on the pill for a long time (luckily I didn’t have too much trouble with that) but they keep finding more and more side effects of BC so I’m not sure what I’ll do now!

    That sounds very painful- hope you can find something soon! *hugs*

    • Megan S December 8, 2013 at 12:58 pm

      Thanks, I really don’t like the birth control options that are currently available! I seem to react to most of them.

  6. Gede Prama December 7, 2013 at 12:37 am

    Amazing and Thank you for writing which is quite good and best wishes always, and greetings

    • Megan S December 8, 2013 at 12:58 pm

      You’re welcome πŸ™‚

  7. barbarafranken December 7, 2013 at 2:59 am

    I wanted to comment on your post car, needles and tense muscles but i couldn’t find a comment button… so here goes… IAM so glad you are trying alternative medicine as therapist’s look at the dis-ease of the human body, mind and spirit and find the cause… Our body is so much more than a mechanical body… Lovely to meet you… I hope we can enjoy each others journey to health and magnificence… Barbara

    • Megan S December 8, 2013 at 1:00 pm

      Thank you Barbara there seems to be a problem with the comments option on my blog at the moment so I’ll be looking into that soon!
      I agree that we have to deal with mind, body and soul to ensure health and happiness.

  8. joynpain2 December 7, 2013 at 12:17 pm

    I feel your pain! Have you tried looking for a doc who specializes in pelvic pain? I absolutely adore mine.

    • Megan S December 8, 2013 at 1:03 pm

      I’m searching for one that I like. Will keep searching until I find the right one I guess πŸ™‚

  9. Celeste December 7, 2013 at 3:23 pm

    Hey Megan! I’m trying to comment on your latest post and I can’t seem to find the place to do so – it won’t even let me in my reader!

    Also, do you not have a contact me section? I feel terrible that I have to leave this as a comment on a different post. :S

    • Megan S December 8, 2013 at 1:04 pm

      Hey Celeste, I don’t know what’s happening with the comments section… I’ll have to do some research on that. My email address is on my About Me page but I think I’ll add a separate contact me section that allows you to contact me from the site. Hadn’t thought of that!

  10. emmx2013 December 22, 2013 at 4:10 am

    I am not familiar with this condition. My own congestion seemed to be fluid build up from too much estrogen and or an imbalance of estrogen and progesterone. From some of my reading there may have been a lack of adrenalin or cortisol hormone also. The latter two help decrease blood vessel size.
    Evelyn
    Here’s to Your Health!
    evelynmmaxwell.com

    • Megan S December 22, 2013 at 7:29 am

      Thanks for your input Evelyn. I’ll look into the adrenalin and cortisol hormone link. I’m still doing a lot of research into this.

  11. Jeanette Clawson January 3, 2014 at 7:10 am

    I have constant migraine with some impact from my menstrual cycle, but pain management techniques that have helped me may be helpful for you, too. Acupuncture has really helped. I have also taken a Mindfulness-Based Stress Reduction course twice and that has helped a lot with managing the overall stress and the stress of pain in particular. I have very frequent vertigo and nausea with my migraines and Ondansetron has been really helpful with the nausea. I wish you well.

    • Megan S January 3, 2014 at 8:17 am

      Thank you Jeanette, I appreciate your suggestions. I am currently trying weekly acupuncture sessions and they do seem to help with reducing overall pain and in relaxing my muscles. I haven’t don’t a mindfulness based stress management course but I do try to practice mindfulness in my daily life and do mindfulness meditations at home. I haven’t heard of Ondansetron before but I will definitely look into it. Again, thank you for your suggestions and well wishes! πŸ™‚

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  13. Distracted Mom February 19, 2014 at 2:40 am

    I’m sorry you’re having a hard time finding the right BC to help you. Long term Depo does lead to loss of bone density, which a friend’s sister is dealing with now. BC could make me sick, especially progesterone-based BC. I currently have the hormonal IUD, Mirena, to treat my adenomyosis. Even though it delivers progesterone, it doesn’t make me sick because it’s delivered systemically, rather than having to be digested first. Could that potentially be an option?

    • Megan S February 19, 2014 at 7:58 am

      Thank you for your suggestion Distracted Mom, this is something I’ve been looking into but again they don’t seem to recommend it for women who haven’t had children yet. I’ve had the second Depo shot but will be discussing my options with my GP again when it comes closer to the end of this round.

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  17. Courtney February 16, 2016 at 8:35 am

    Hi Megan – I know this post is from two years ago, but I just stumbled upon it, and seeing that your blog is still active, I wanted to reach out.

    I was diagnosed with PCS in Nov 2014. And like you, I haven’t had any children and my doctors deemed it as a rare case. I’ve been on Depro for a little over a year and while the cramps eventually (mostly) went away, I’m having a new kind of pain (less sharp and more a dull, tight ache). I wondered where you are on your journey with PCS, if you’ve stayed on Depro, what seems to be helping you, etc.

    Thanks!

    • Megan S February 16, 2016 at 8:50 am

      Hi Courtney,

      Thanks for reaching out. I still have pains (reduced but not gone) and still trialling different drugs and pain management techniques.

      I came off depo about 14 months ago when a bone density scan showed that I have osteopenia (step before osteoporosis) and we thought it might be because of the drug. It had been helping the Pain a bit but I decided it wasn’t worth the risk.

      One thing I found very beneficial in reducing (but not stopping the Pain) was getting a series of stretches and support from a specialised pelvic floor physiotherapist. I think I’ve done a post on this in the past but might do an updated one soon.

      Still trying to work out what helps really, and trying to get my body to a point my husband is comfortable with considering starting a family.

      • Courtney February 16, 2016 at 10:19 am

        Thanks much for the reply Megan – I hadn’t heard of the PT aspect, so may look into that. Will also read your post about it.

        Good luck to you in your journey!

        • Megan S February 16, 2016 at 10:22 am

          You’re welcome 😊

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