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My struggle with Nipple Vasospasm – Lily’s story

Posted on January 13, 2009
Filed under: Caesarean/cesarean birth, Exclusive expressing, Expressing, Flat nipples, Latch problems, Mastitis, Nipple Vasospasm, Nipple pain, Oversupply

I never expected breastfeeding to be easy but I never once thought I wouldn’t be able to do it. When I decide to do something, I do it right and I do it well. So I thought with a little perseverance I’d be okay.

Hamish was born after a long, 38 hour labour that ended in and emergency C section and a hemorrhage on the table.

Over the first two days in hospital I actually thought breastfeeding was going okay. By the third day it became apparent that his attachment was not right. He was going yellow from Jaundice and my nipples were super sore and sensitive. The pain was unbearable every time he sucked. Numerous midwives and LC’s tried to help but every time he went on, no matter what position he was in, even when it looked like it was right, it was complete and utter agony! Eventually a nurse had me express so that he could get some fluid, the unusual thing was even on the pump it was agonising. There was clearly no friction on the nipple, yet the pain was awful. She told me that it must be my nipple tendons stretching out, as I have very flat nipples.

So with this in mind I kept feeding him through the pain, thinking that he must have been on correctly even when it was hurting. I was sent home from hospital everyone thinking we were fine. We weren’t fine at all and I was becoming more and more emotional as the pain continued. I couldn’t stop crying and I was so worried that everyone would think I had postnatal depression, I felt like a complete failure and started to feel like I didn’t really want to be a Mum at all and that I had made a huge mistake.

After only 2 days at home my nipples had scabbed over so badly that they were completely hard and brown. I couldn’t handle him sucking any more and I moved him on to expressed milk in a bottle. This to me felt like I had descended into the depths and couldn’t believe that I was unable to make it work. I was unable to express without blood coming out of my nipples, mmmm, pink milk! I remember one day when I had the nurse visit she convinced me to have a go at feeding him again. Poor little fella was so confused about being constantly taken on and off that he would scream and scream and the next time he came off so did the scab and I could see it sitting on the back of his tongue as he wailed with his mouth wide open before he swallowed it. I just wanted to curl up, put the pause button on and sleep for a few weeks, then press play and start again.

Expressing So we continued to express and bottle feed. The scabs healed fairly quickly but the pain I was still feeling was terrible. No one could tell me why, until one day my lactation consultant asked me if I had any spasms in my nipples? I said no, not really understanding what she meant by spasm. I felt periods of intense pain between feed but didn’t know this is what she meant. Anyway so she then said “oh it’s just that there is this thing called Nipple Vasospasm where your nipples go white and you have these spasms which can be very painful”. The bells started ringing and I explained to her that I did get this blanching of the nipple and had done all through my pregnancy. In fact my nipples had always been very sensitive.

Nipple Vasospasm is the same thing as Raynaud’s Phenomenon, which is when the blood vessels constrict, which can cause a lot of pain. People often have this in their fingers and toes when it is cold. I myself have it in my toes and as it is hereditary most of my family have it also. Unfortunately I get it in the nipple as well. So this explains the pain. The poor attachment is then caused by the fact that I could not tell if he was on correctly. It hurt either way. Sometimes I would pull him off thinking he was on wrong and my nipple would be a beautiful shape, other times I would think I was only feeling the pain from the spasm and he would be totally mincing me up!

I tried all of the recommended supplements and techniques that are supposed to help and was even prescribed medication. Nothing put a dent in the pain. Sadly I continued to express and bottle feed, every week thinking it would start to ease. After 10 weeks of this I had all but given up. I purchased a double electric pump, which cut my expressing time down by almost two thirds and formulated my plan.

In order to keep going I decided that I had to have an end in sight. I decided that if I could express full time for 6 months and store any extra I could get out in a deep freeze, then after 6 months I would introduce a formula feed at night. I would continue to express as much milk as I could and then hoped that by about 10 months old I would have enough stored milk to feed him through he was 12 months old. This plan made me feel as though I had some kind of control over the situation and made it easier to deal with. Luckily I had no problems with milk supply and it simply pored from me. My stores started to mount up and I felt for the first time a sense of success over the breastfeeding process.

When Hamish was about 3 months old he started to sleep very badly. I became more and more tired, stressed and run down. It was then that I began to have problems with blocked ducts and an oversupply of milk. Nearly every single feed there would be blockages. Some would come loose at the next expressing session and others would stay put for days. The pain was great and I began to feel very sad that I was hating the whole process again. From time to time I would still try and give Hamish a feed. He was a good boy and would usually oblige. Often he was able to loosen a blockage that the pump could not and my beautiful husband and I gave him the name, ‘The Lumpinator’! No matter what I did I was not able to feed in any ongoing way. I tried to feed him once a day every day but this rarely worked for more than 2 days in a row and frequently there were weeks and weeks between him feeding from me.

For some reason my boobies just had no system to the amount of milk they would make. It seemed that the more tired I was the more milk they would make. The lumps and blockages were continuous and very painful. When he was about 5 and a half months old I came down with my first bout of Mastitis which saw me in hospital for 2 nights on intravenous antibiotics. After this episode the incidence of blocked ducts was reduced by quite a lot and I wonder if I had a very low grade infection that whole time? A few weeks after that, for some reason, my Vasospasms started to become slightly more mild. I was able to feed Hamish once a day every day for a couple of weeks. I was so happy and from then on I slowly introduced more and more feeds. Over the next 3 months I increased his breastfeeds till I was only expressing last thing at night and first thing in the morning. I can’t tell you how much this improved my life. I wasn’t tied to home every few hours in order to express and I was feeling like a real breastfeeding Mother. I think the act of Breastfeeding was a huge part of what I thought being a Mum was.

Breastfeeding Since Hamish was 9 months old, I have been feeding him all on my own. He is 14 months old now and I can’t tell you how happy I am. I have had 2 more bouts of mastitis but nowhere near as serious and only several blockages. I still have the Nipple Vasospasm but it is so much more bearable than it used to be. I still experience pain when I am feeding him but the spasms between feeds are so much less and over all I am able to do it with very few problems. During all of my problems I felt very helpless, I had much support from my partner, Mum and friends but deep down I really felt a failure. Now that I have some hindsight I see that what I did was a really good thing for Hamish and I am so proud of myself. There were many times that I wanted to give up but I am glad that I was determined and continued to success. I am also thankful and proud of my little boy who was always so flexible, swapping from bottle to boob and back again, and who will now not even take a bottle.

Filed under: Caesarean/cesarean birth, Exclusive expressing, Expressing, Flat nipples, Latch problems, Mastitis, Nipple Vasospasm, Nipple pain, Oversupply

Comments

5 Responses to “My struggle with Nipple Vasospasm – Lily’s story”

Joanne on March 2nd, 2009 5:32 am

Wow Lily. Talk about dedication. I had a few cracks and am experiencing what I think might be a mild vasospasm (also have Raynaud’s), but nothing like what you’ve been through. Well done for pushing through. It’s really inspiring. Hamish is a lucky boy.
Agnes on May 30th, 2009 5:08 am

What a wonderful gift for your son that you persevered through such difficulty!
Emily on April 2nd, 2010 7:34 pm

Thanks so much for your story, I am experiencing a very similar thing with my 4 week old baby and it is great to know that this has improved for you. I have also been crying a lot from frustration and feeling like a failure and am worried that people will think I have post natal depression. I really want to make this work and your story is an inspiration for me.
Thanks, Em
erica on May 17th, 2010 9:25 am

I am on the same boat as you were. Maybe i missed it but, what do you think broke the cycle? The mastitis, the help of intravenous antibiotics or just time? My baby is 3 months and i’m on a low dose med of nefedipine and not seeing much change 4 days in. Any thoughts or suggestions? Thanks, EZ
Vivien on June 12th, 2010 10:44 pm

Lily your story and mine are so similar. My initial 2 days in hospital things appeared to be going well but by day 3 it didn’t matter which way my son was attached it hurt. Even when I was being told it shouldn’t hurt because he was perfectly attached (I started thinking I must be crazy when other people are telling me it shouldn’t hurt).. Have also been doing the expressing thing but actually realised that I had a problem at 2 weeks when I got out of the shower and had massive pain and was looking at my nipples and saw them change to white and then purple. For me it was both nipple and full breast pain and excruiting.
EZ with regard to nifedipine this drug is the mostly commonly proscribed but didn’t work for me and doesn’t work for all. I tried 20mg, 30mg, 40mg, 60mg, 90mg and 120mg – no improvement or relief. You may find if you aren’t getting any relief and you should be by day 4 that you either need a higher dosage of nifidipene or that you may need a different drug.
I’m now using methyldopa and this has been a god send. I’ve gone from constant pain to a whole day of being pain free. I worked up from half a 250mg tablet to current dosage. But even at half a tablet per day I could see an improvement within 2 days.
The other thing I found helped was to wear wool on my chest.
I’ve had a fractured foot and that was nothing compared to nipple vasospasm.