Wednesday, June 29, 2011

SUCH good news! A post on Nipple Vasospasm and Treatment

This post is about breastfeeding so if that is a bit of an offensive topic for you, it's probably best for you not to read on. Just want to give fair notice that's all ;)

Ok so for those of you who know me in real life (lol) or who have read my blog over the past couple of years, you will probably know that I have struggled HUGELY with MASSIVE amounts of pain that last for MONTHS after each of our children is born as I try to breastfeed them. Just so I can be clear about what kind of pain I am talking about, it's like someone has sliced open my nipple with a knife each feed, between feeds also (and also even just when I am pregnant), has doused vinegar on the nipple and then attached a vice and clamped it down hard.

I'm not exaggerating.

This is seriously what each feed is like for me for the first 3 to 4 months. After that there is STILL pain but it seems to wear off somewhat. This I now know has probably more to do with it coinciding with warmer weather - more on that in a minute. I've also experienced thrush and several bouts of mastitis and believe me, the recurring pain of vasospasm can not compare. It is horrendous.

Brett can vouch for this - every feed he has to be there to hold my hand (or my mum or dad or whoever is nearby) while I white-knuckle it and cry. Often the person whose hand I am holding also ends up in tears because it is so difficult to watch. It's so difficult to live too because as a mum, you want desperately to feed your baby and the thing that stops you is pain. You wish that there was some way you could just keep going but I tell you the pain is so intense I've near passed out from it over and over again this happens. The words frustrating, upsetting, heartbreaking just don't really describe it accurately enough.
I think I've painted a fairly accurate picture for you and how much I've struggled with breastfeeding.

So why bother? (These are my thoughts and heart feelings that I am sharing here - these are not to shared to condemn others.)Well, I want to give my babies the milk which I believe God designed for them to have. I know that breastfeeding is a time for bonding with your baby; a special time that involves just mama and bubba. I know that breastmilk helps my babies immune systems to be boosted and helps to protect them from sicknesses. I cherish the feeds I do get to have with my babies and even though they have never fed for as long as I have wanted, I tried my hardest each and every time. I love looking down at them and them looking back up at you and stroking their hair. I love talking to them while they are feeding and once the pain leaves (often around the 5 or 6 month mark) I really can enjoy feeding so much more. I love that breastfeeding is portable and cost effective! To me, it is worth the pain and the effort to give them a great start in life!

However, the pain that I have experienced in the past does not make me look forward to feeding. It would be abnormal to look forward to experiencing that kind of level of pain on an on-going basis. I look forward to birthing but to feeding, well....that's different.

This pregnancy I have prayed and prayed for Yah to help me understand it all and show me the way through this journey. I have prayed for answers and I have been given some! This has provided me with so much hope and encouragement that I can't even express.

I wanted to document it all so I can look back in the future and remember how Yah met with me and what he showed me.

Early on in the pregnancy I was reminded to look up NIPPLE VASOSPASM. In the past I had looked this up but had discounted it because I thought that you had to have RAYNAUD'S PHENOMENON as well. I do have some of the symptoms of the latter but you can also have nipple vasospasm without having Raynaud's Phenomenon. Anyway, I decided to look it back up again and this time found some great information. I disussed it with our lovely Midwife Hazel who agreed that it did indeed sound like Vasospasm.

So I began praying about what I should do about it.

Then I went to the local health store and bought a nerve tonic since I thought it was a nerve issue.

Then, as I started reading about it, I began to understand that this is a condition which affects the blood vessels. The blood vessels become constricted; often through cold weather or just being sensitive to the cold. This means they tighten up and restrict the correct flow of blood through the vessels.

I came across some amazing websites that have helped:






These things basically led me to looking into a pharmaceutical drug called Nifedipine. This is a drug which helps to open up the blood vessels and can be taken as a slow relasese dose.

Now here's where the 'SUCH good news' part comes into the story!

A little while ago, our lovely MIDWIFE HAZEL came across THIS PUBLICATION REGARDING A CLINICAL TRIAL OF 12 WOMEN SUFFERING FROM VASOSPASM. Some of them were treated with Nifedipine and this was found to help them! One woman who had preciously been in severe pain, took the Nifedipine and the pain ceased and she was able to feed her baby WITHOUT pain! I can't even begin to imagine how amazing that must be!!!!! The pros of Nifedipine are that almost none of it crosses over through the milk making it safe for baby and that the side effects for mum are small IF ANY - headaches and dizziness seem to be the worst and believe me that is NOTHING compared to the pain I normally  have breastfeeding!

Now, the problem that both Hazel and I saw about this particular drug was that it opens up the blood vessels. Having had an auto-immune blood disease 5 years ago that is now in remission, anything that has to do with bleeding needs to be taken very seriously. In order to meet Medicare requirements, I had to (and would have anyway) have a consult with my haematologist. And he has said that Nifedipine would not affect my platelet levels at all and would be fine to take from his point of view after baby is born - YAAAAAAAAAY! You have no idea how good this is! It may not work, but we can at least try it! This gives me hope!!!

So here's what we are doing so far to tackle the pain of Nipple Vasospasm so far:

1. I will be taking a slow-release (short course hopefully) of Nifedipine once bubba is born

2. I have purchased  SORE NIPPLE HERBAL WASHES from DOULA JULIE BELL IN MELBOURNE. These include herbs such as:
 * Wild-crafted Witch Hazel -
* Calendula
* Lady's Mantle
* Marshmallow
* Lavender
* Chamomile
* Peppermint
* Red Clover
* Celtic Sea Salt

3. I will be purchasing (when funds permit!) two packs of woollen breast pads. I already have A PAIR OF THERMAL BREAST WARMERS.

4. I have purchased comfrey root ointment and will be rubbing that into the areola and nipple for the remainder of pregnancy to help strengthen the nipple.

5. I also have a herbal ointment cream to rub in once bubba is born (as I can't use comfrey then)

6. These are some of the things we are going to be doing. I also have 6 weeks of post-birth breastfeeding support (daily if needed!) from our lovely midwife Hazel who is also a breastfeeding counsellor for ABA (Australian Breastfeeding Association) so if we encounter any other probs, we can tackle them head on with her!

7. In the meantime, I have been attending meetings of my local ABA group and have met some wonderful women there. Just connecting with like-minded people is very encouraging isn't it?

8. I have contacted a breastfeeding counsellor who also suffered from Vasospasm and have shared my story with her and am looking forward to hearing of her experiences too.

9. PRAYER! Lots and lots of prayer! I know that Yah wants what is best for me and my child and our entire family so we are continuing to trust in Him; that He will lead and guide us all the way through and help me even during the hardest times - He always has!

10. The last thing on my list is just to give it the best shot I can!

All in all, I am feeling SO much more positive and hopeful about this whole situation. To know that there are things I can take that won't harm me or my baby and that may ease or even take away all the pain is SUCH GOOD NEWS!!!!

I hope that anyone who stumbles across my story here will be encouraged especially if they have suffered from Nipple Vasospasm. If you think to pray for us that we will have a successful pain-free feeding experience, that would be so greatly appreciated!

More to come soon,



Sarah Slaven said...

That's so great that you have found so much help.

Sarah Lou said...

Thank you thank you thank you. This is me last baby and every one kept telling me it was nothing, even though with all the issues i kept telling them that this time something was up and mentioning my nipples turning white. My last child was horrid to feed to the point of almost giving up at 6 weeks but i felt so guilty after feeding my other 2 boys for 3 and 2 years. This information has come right on time as i am due with my fourth in october.
Thank you

lusi said...

Thanks Sarah!

And Sarah Lou- I am SO glad that this was helpful in some way! I'm sorry you had such a hard time of it too. Hope that you can get some support and put some things in place to help to prepare for your next feeding experience. All the best with your baby, birth and breastfeeding!
Let me know how it all goes!
Love Lusi x

caz1975 said...

Glad to hear that you have found some help Lusi, here's to beautiful breastfeeding times ahead! :-)

lusi said...

Thanks so much Carolyn!
How are you going? I was thinking of you this week.
Much love,
Lus x

Mommy Set Free said...

My heart goes out to you Lus! I had SEVERE pain when nursing my first baby 13 years ago. I can only describe it as "fire shooting from the top of my breast down to the nipple comeing to a great head there." Being my first baby, I was insecure and questioning my abilities to even mother AT ALL, but I had taken much time in prayer and equipping for the task all through my nine months and had a conviction (stubborness!) about nursing (I still do! :-) ). I suffered for almost 3 months with this things that no one could seem to "diagnose". Every time I nursed, I cringed and tightened up. I cried I was in such pain. I in defense of what might (and did) come (extreme pain). I sought help from docters, Lactation consultants, midwives, LeLecha League, Mother's of 8 - nothing....Most of the professionals "dismissed it" and had an air about them, as if they thought I was looking for an excuse to go to be justified to go to bottle feeding. (That made me mad!) Finally, after suffering 8-12X a day for those first months, I found myself in a Chiropractor's office for someone else and I was nursing in the lobby and trying to hold back my tears when we were called in. I casually with no hope of help (and in desperation), asked him if there was ANYTHING he could suggest or anywhere he could send me for my problem(Oh tears came!!) He said, " I think I can help you, have a seat here", He adjusted me once and fixed it! I NEVER felt that pain again! He didn't even charge me!!! It was symply that I was out of alignment and a nerve was pinched! My only symptem was the the pain during nursing. My Midwife had suggested I go to the Chiro as a standard thing (she tells that to all her patients) and never associated this with that. But I never went (just being lazy). Had I done what she said - straight away, I never would have endured that torture! Needless to say, now - I am a big fan of getting adjusted as a general rule after each birth for standard post-pardom care. :-)

Much Love, p

rockmelon said...

great post, blessings as you await to hold bub in your arms!

Peterson Party said...

Thank you! I will be looking more in depth about this subject. The pain was so severe with Arin that I only nursed her about 2 weeks, then pumped for 6 months before drying up and giving her only formula. Ella, I breastfed through the pain (and bleeding) thinking she just had the wrong latch? It was painful and even after the pain wore off, it was still never an enjoyable experience. Do you make a good milk supply? That's the other thing, I never had a wonderful milk supply, but I was able to nurse Ella until she was a year and a half. I had pain on and off throughout the experience. Was wondering if we were ddealing with yeast, but maybe this is what it was???

lusi said...

Hi Rochelle, Thanks - we can't wait!

Oh Pamela, I really understand! I'm so glad you were able to have it fixed so quickly (and miraculously!) through a chiro adjustment - that's fabulous! Thanks for sharing your story with me :)

And Cara, I feel for you my friend having gone through so much pain with it too! You did so well to feed both your girls with mama's milk for so long! Good on you! Maybe chat with a lactation consultant and see if any of what I shared fits for your case too. I do have supply issues but apparently that is quite common when there is so much pain associated with it. It can be like a vicious circle; the pain is unbearable, which makes you want to feed less or sometimes because the pain is so bad the let down might now come properly and then the baby wants to feed more which causes more pain and it can go round and round! Hazel (my beautiful midwife) was explaining this to me the other day and it made so much sense!
May this time round be so much better for you! (and me!!!)
With love,
Lus x

frills and spills said...

That's awesome Lus!!! Praise God for guiding you through this. You're so brave and gracious for sharing your experience - it may just make the difference for another mum who struggles to breastfeed. I've never even heard of this condition, this could be one big reason why so many other mums feel like they have to give up breastfeeding - just because this stuff isn't always talked about so they don't even know about the help and solutions that are available. God bless you gorgeous girl xx

caz1975 said...

Funny you were thinking of me this week Lusi cause it's been a tough week. A close family friend and one of my spiritual mentors died early Tuesday morning. My latest blog post is a tribute to her if you want to read it

lusi said...

Hi Jas, Totally praising Him for all this! I really hope that sharing this might encourage someone else to seek out other answers and get the help they need in order to continue feeding their child. Thanks for your encouragement today Jas - you are so lovely!
Love Lus x

lusi said...

Hi Carolyn,
So sorry to hear about your friend passing away. May God bring you and your family and friends His comfort.
Love Lusi x

Sarndra said...

Thats wondeful Lusi you have solutions there that I'm sure will help you! U have done amazingly well thru all that pain for so long! I really hope that this time is different for u. Lots of love

Zarna said...

Wow! That sounds like an extreme version of what I went through breastfeeding Charlotte, it was painful every single time, I asked about it and got the family health midwife to make sure Charlotte's attachment was the way it should be, we couldn't work out why it was painful when everything was "right". As soon as you said a knife slicing your nipple it all came flooding back!
I ended up only being able to feed for 3 months before it got to the point where I couldn't handle the constant pain anymore. With Jack we had to stop for other reasons, the pain wasn't as severe but I suspect that's because he wasn't feeding long enough.
I still get the vice like feeling when it is cold, even though I haven't breastfed for over 2 years, those thermal pads look very tempting!
I hope everything goes well for you and that you are on the right track for smooth feeding this time around!

Anonymous said...

It is NOT fair that some women experience pain while doing something that is meant to be so loving and natural.

I have always felt very lucky that I was able to breastfeed my daughter for over a year without any problems.

I am thrilled that you have found some information and medication that might give you that same chance. How exciting and special for you and your new baby. Praise the Lord :)

Keeping my fingers crossed that everything goes well and breastfeeding will be much more enjoyable for you this time around.

From Susan McGuire xxoo

lusi said...

Thank you lovely Sarndra - I am hoping some of these work and give us a better chance this time round. Hope you are feeling well my friend. Sending my love!

Hi Zarna! Long time no chat! It was lovely to read your comment here although I'm sorry to read that you also had alot of trouble and pain with feeding. My last one was like Charlotte that the latch was all fine but there was still incredible amounts of pain. If you still get the vice like feeling in the cold, it might be worth getting some of those breast warmers just to take the edge off it or some small woollen ones. How old is Jack now? Hope you are well!
Love Lusi x

lusi said...

Hi Susan :)
What a blessing to be able to feed your daughter for over a year without pain! That is SO WONDERFUL! We are thankful to Yah for leading us to all this info and now HOPEFULLY we'll have a different feeding experience :)
Much love to you,
Lus x

Zarna said...

Hi Lusi! Yes, it's been ages! I still read but I'm a lazy commenter!
Jack is almost 2 now, his birthday is in September and it's scary how fast my little man is growing up, I'm looking for the cot manual today to work out how to convert it to a toddler bed for his nap this afternoon. Fingers crossed he doesn't freak out, he loves his bed just the way it is.
I remembered this morning a friend of mine who said once when she was pregnant she used to get nipple pain that was so bad in the cold that she would pull out the ironing board & iron, iron the board until it was hot and then lie on the ironing board for some relief lol the thermal pads seem a lot more practical haha
All the best with the rest of your pregnancy, not long to go now!!

Marc James said...

You are not alone!! I suffer from the same condition. With my first son, it took a whole month of feeding through pain…and then 3 hours of agony in the bathroom floor from the pain I experince, he was only 1 month when I had it so he fed so frequently too…horrific. Nobody knew what it was…until I found it when I saw my nipples going white after a feed. I was able to feed my son for 21 months ( only 1 month of pain) And it was trigger by the antibiotics I took…with my second baby I avoided antibiotics and I was blessed to not experience it until now ( at 15 months old) I think a mix of things trigged it this time… I'm in pure agony while feeding….I'm hoping and praying that it will go!!! The best for you too!!

Anonymous said...

I know this story is a few years old, but I just wanted to say thanks for sharing, I'm pregnant with my 4th and am only just learning now that vasospasm was why I had so much pain trying to breastfeeding my other 3. I always thought it was a bad latch even though all the lactation consultants said it looked fine. It was so confusing and it's upsetting no one could offer any help, I'm left to myself to research every possible cause. I felt I had no choice but to stop breastfeeding after only a matter of weeks in the past because the pain was so great, I now know I wasn't dreaming up that agonising pain. I'll be looking to into how to prepare for it this time round and try to combat it!


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