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Sickle Cell & Your Period

Sickle Cell & Your Period

I was wondering if anyone else has pain right before their period starts or during. I never was a woman to get cramps or migraines but i do get pains in my left knee right before my period starts. Lately I’ve been also feeling drowsy and drained.

I have said on here several times that ones menstrual cycle can trigger a crises. What I also forgot to mention was everything that goes into that combination.

You all know that sickle cell warriors are naturally anemic. This means that we already have a low blood count, less oxygen carrying ability to our cells and are at risk for fatigue, exhaustion and tiredness.

Now, when you throw in a period, your are losing blood on top of your low hemoglobin count. If you were to check your Heme counts then, it would be lower than your normal ‘healthy’ ranges. So being tired, sleepy and exhausted are natural states that can be exacerbated by one’s menstruation cycle.

Some warriors have pain in their lower back (like me), or other joints before, during or after their period. Remember that during your period, there are alot of hormones floating around doing Mother Nature’s bidding: Gonadotropin-releasing hormone (GnRH), Follicle-stimulating hormone (FSH), Luteinizing hormone (LH), Estrogen, Progesterone and of course, Testosterone.

Research has supported that these hormones contribute to ligament and muscle laxity, swelling in the joints, and collection of fluid throughout the body. All of these have the potential to cause additional pain, that one might attribute to sickle cell pain, but is actually period pain.

Of course, having a low heme count can trigger pain or a mini-crises, since your cells are not getting enough oxygen. Remember, pain is the natural body’s response to stressors, a warning signal telling you that something is wrong.

During my period, things that help most are a heating pad (heat is very good!), taking naps, Motrin every 6-8 hours and sometimes when it’s really bad, a glass of wine. Wine relaxes the muscles in the body (including the cramping uterus), and makes me relaxed enough to fall asleep.

There was a time that I used to dread my periods, because I could almost attribute them to triggering a crises. However, over the years, I have learned to stay hydrated, take Folic acid during that whole week and avoid other triggers of a crises.

As with everything else, one’s menstrual cycle is another facet that we must balance as sickle cell warriors.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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43 Comments

  1. miss b
    miss b February 27, 18:54

    I have been waiting for someone to bring this up because it has affected me so badly. There was a time about last yeaR where I used to have a crisis EVERY time and I mean every time I had my period. They were irregular but when they did not, I usually got pain firstly in my lower back about 4 days before they star. Then it would be weakness and general body aches and then it would just escalate into a full blown crisis.
    Since taking hyhdroxuea though, I have not a crisis in over 8months, although my periods are still terrible.
    Heat always helps, especially hot water bottle, drinking hot drinks and being in the warmth. Ibruprofen also helps and so does buscopan.
    I am still dreading my next period though!
    Thanks for talking about these issues.

  2. Nutty Jennifer
    Nutty Jennifer March 01, 00:24

    And I thought I was the one with a problem
    I get crises pains everytime my period ends and this could send me sometimes to a week out of work.

    I dont know what to do again…Nicosan is finished, and I'm seriously dreadin the next period, I cant afford to be falling sick every month, its not good for my job.

    I do take folic acids, Ibrufen, buscopan, vesoprin etc…I pray God helps me.

    Good write up!!

  3. Lisa
    Lisa June 29, 11:32

    My problem is that the week before my skin burns, back hurts and I just feel awful.

  4. Bonnie
    Bonnie September 22, 07:06

    I read the article on pain crisis around the time of one’s period and though I have experienced this it rarely happens.
    I am 52 years old, I was born with sickle cell disease and am going through the menopause process. So far I have not found any information on women in my situation. Has a study been done? The women in my family (non-SCA) have all ended their cycles at the age of 49 and I’m still going. Does that have anything to do with SCA? And at this age I’m finding myself more tired during my periods than ever…I’m really ready for this to be over!

  5. mia
    mia February 03, 13:54

    I am glad I found this site. I thought I was going crazy when my skin started to burn and often I too feel as if my body wants to sickle. It’s happened a couple times already. As far as hydroxyurea, I can’t take it because my numbers are better the way they are being that I have Sickle Cell SC not SS. I have had two children back to back and since then my periods cause so much pain and I have way more crisis now. Of course every sickle cell patient is different but we all experience the same pain when it hits.

  6. Sickle Cell Warrior
    Sickle Cell Warrior Author February 10, 05:07

    @Mia, we are glad you found us too. Please come to the facebook page at http://www.facebook.com/sicklecellwarriors. There are over 3000 members there and we share daily of all our struggles, challenges and successes.

  7. Kandis Moore
    Kandis Moore February 10, 07:23

    If you all pay attetion you should get the birth control DEPO-PROVERA!! It stops ur menstrual cycles…..my hematologists put me on this when I was 15 yrs old bcuz they notice tht all of their female sicklers were crowding their floor n the beginning of the monyh. So they told us abt the bc shot n u get it every 3 months n it stops ur cycle. Im 31 now & do have a kid but I had stopped my depo on my own then soon as my yr was up off me takn it I was pregnant n then rite after I had him I started it back up. Ots VERY SUCCESSFUL n maintaining no pregnancies n stoppn ur menstrual cycles cuz Idh periods.

  8. Kayla McCoy
    Kayla McCoy February 14, 00:06

    I am 17 years old, & I have sickle cell. I was diagnosed at I believe 6 months of age. As I went into my preteen/teen years, & began having periods,I noticed that I started going into a sickle cell crisis every time I started my period. To prevent this from happening I was put on the DEPO PROVERA, but I still have the same problems. I’m not sure what to do now. My hemotologist and gynocologist have ran out of remidies. They have tried everything. I believe almost every sickle cell patient goes through the same unbearable pain around that time of the month. It’s terrible! Nothing seems to help any of the pain. Every since I was 11 years old ( when I started having periods) I have had pain consistently every day since then. I have not had a break from pain in years. I have been in pain consistently, but my docter’s cannot seem to figure out why… So we are all unsure what to do now, besides keep consistently trying diffrent pain meds.

  9. Dee Prince
    Dee Prince April 17, 13:37

    Thanks so much for this site. It has really helped me handle my daughters crisis during her cycle.

  10. Yalonda
    Yalonda June 01, 20:40

    I am 46 year old woman that has SCD and I just started experiencing these symptoms. I just made the connection within the last month that this was happening and my cycles are becoming more irregular so I’m have two cycles within a months time. I saw my doctor yesterday and I requested to have endometrial ablation to stop my periods all together. This procedure isn’t for anyone that still wants to have children. I’m done having children so it’s the perfect solution. I can’t take having unnecessary crisis on top of the regular ones I get throughout the year. I hope this info helps someone.

  11. JoyousJoy
    JoyousJoy June 11, 04:48

    Am glad I found this website too, I have the trait and I dread my periods coz I have come to learn that my crises occur either during or just after the period I am often rushed to er ‘literally screaming’ and giuen fluids and painmed When they are mild buscopan and ponstan help but am usually drained so i tend to sleep alot… I have learnt to increase my intake of beet juice and avocadoes around this time, it helps to clear the fog in the head! God bless!

  12. MAim
    MAim July 14, 22:39

    Hello guys just found out about this website when I was looking for solution,pls can anyone educate me.
    I am SS,and I started my period I think when 13 or 14 I can’t really remember but ever since my period has been so irregular that I hardly see blood during my menstartion it just little pinches dat come out and maximum I have my period is two days, told a friend and she tells me its dangerous cos it mite lead to menopause am just 22. What can be causing this.I hardly use pads again cos I feel its a waste. I just use only tissue.
    Please who know what can b wrong with me.

  13. sokode
    sokode August 17, 17:05

    i just found this website. my problem is dat my periods are irregular that is it i sometimes dont get my period in a month or two.pls is dis normal for a sickle cell patient?

  14. Sickle Cell Warrior
    Sickle Cell Warrior Author September 21, 16:07

    @Sokode, yes it is normal for several people with sickle cell. it is because of the anemia, so your body is conserving it’s blood:)

  15. Fra Aka
    Fra Aka September 28, 18:51

    Sickle Cell Warriors! Love this title I’m glad I found this community. I’m 21 with SCD got my periods at almost 16 but I still don’t know wether I have a 28 or 30 days cycle, it varies from month to month so I figured I have an irregular cycle but do you think it will eventually get stable or stay this irregular because I have sickle cell? As for the pain I only get lower back pain for the first 2 days and that’s it, never had a crisis triggered by my period and therefore never dreaded them. I take hydroxurea too and since, my big crisis are gone (unless I catch a cold or get infections). It is nice to feel part of a community, thank you to whoever created this website, I am going to like the fbk page right now!

  16. Qtpiesickler
    Qtpiesickler October 02, 21:35

    To MAim & sokode. I haven’t experienced this myself but I have heard a lot of sicklers (female) say that they either have very light cycles, irregular or no cycle @ all. Me myself I have had regular cycles since age 11. After having my first child by c-section I began having really bad cramps @ the beginning of each cycle. I had my last child a little over 2 yrs ago. Afterwards I had my tubes tied. Now I still have the worse cramps but I am also beginning to go n2 crisis during my cycle. In July I was completely bed ridden due to the pain & exhaustion. I found myself hospitalized in August & September due to a crisis during my cycle. Now I’m n the process of trying to figure out a treatment with my doctors

  17. Sickle Cell Warrior
    Sickle Cell Warrior Author October 05, 12:18

    @Fra Aka,

    It varies from person to person. But the anemia that we have can lead to irregular cycles. Welcome to the Warrior Family my dear!

  18. comfort
    comfort January 09, 14:39

    wow so happy to find this… always been feeling lonely…
    I love the name….thank u so much

  19. Manielly
    Manielly February 16, 05:01

    It great knowing i am not a freak i taught i was de only SCA dat has crises during my period. sometimes i go down for a week+ sometym just 3-4 days and it usually get severe i just hope dat one day it will come 2 an end

  20. Honeycandy
    Honeycandy April 07, 02:17

    Your comment..Thanks soo much.I always have crisis during my period,i thought is not normal.

  21. tracy
    tracy April 16, 14:32

    I just found this site.i have not noticed pain around d time my period begins because my period has been very irregular. I mean, a whole month or 2 can pass by and I’ll see no sign of a period. even when it does come it so light its almost negligible. but it does cause cramps though. it makes me so confused and feel less of a girl. please is this normal?

  22. Sickle Cell Warrior
    Sickle Cell Warrior Author April 17, 21:00

    @Tracy, I posted your question on the Facebook page because I wasn’t sure myself. I think that because we are naturally anemic, our periods are prone to be missed or faint. My sister has the worst periods and cramps, she is bedridden for 3 days bleeding profusely. It’s not something I would every willingly sign up for. Just enjoy your blessing my dear. You are not less of a woman, you are a warrior! https://www.facebook.com/SickleCellWarriors/posts/10153564726672849

  23. Sickle Cell Warrior
    Sickle Cell Warrior Author April 17, 21:26

    @Manielly, nope, you are not a freak my dear. You are a sickle cell warrior!!! Wear it with pride:) And welcome to the Warrior Family!

  24. Nita
    Nita June 13, 10:20

    My daughter is 19 and for the last four or five years she has experience the same problem. Two weeks before her Sickle she has a sickle cell attack. Her pain start with her leg n femur bone and lower part of her back. Pain medicine doesn’t help, the ER doctors tell us there is nothing they can do, they us to go home and deal with pain or try a pain management doctor.

  25. MsLoco
    MsLoco June 18, 08:53

    Hey guys, I’m a 19 year old junior in college (soon to be 20) diagnosed with SS…I’m quite scared to apply to Medical School cos well I have the disease and I get pains at it is right now in college…I’m afraid I may not finish medical school. Any advice?

  26. Liz
    Liz June 30, 23:18

    Great to have known this page,I had transfusions majorly coz of this and with time i was put on hormonal pills to correct my irregular profusing flows which helped correct my PS, but up to now I battle terribly with crises before ,during or after my periods.Thanks to SC Warriors, with JESUS CHRIST we can do all things

  27. Dellsdaughter
    Dellsdaughter July 13, 04:19

    A lot of ppl do not know that it is possible for ppl carrying a trait of sickle cell to experience extreme pain or crisis.

  28. Sickle Cell Warrior
    Sickle Cell Warrior Author July 14, 13:09

    @Rebecca, you are correct. Although milder than fullblown SCD, people with trait can also have pain episodes. Recommendation is to rest, hydrate, and take some ibuprofen.

  29. Sickle Cell Warrior
    Sickle Cell Warrior Author July 14, 13:17

    @Liz, thank you for the encouragement. It takes alot to run this website, so I am glad to hear that it is helping you.

  30. Aisha Williams
    Aisha Williams August 11, 14:45

    Hi my name is Aisha Williams I have ss and go through the same ish yalL go through and I would love for y’all to be in our sc group on so y’all should look me up on fb Aisha Williams or use rasberrybombay@gmail.com to find me and I’m hoping I can find y’all

  31. AmeriaWellban
    AmeriaWellban September 02, 13:45

    I would have to say that period pain is worse than sickle cell i have sickle cell myself but not thing can beat period pain it’s the worst sorry to you my fellow younger ones

  32. Sickle Cell Warrior
    Sickle Cell Warrior Author September 16, 11:26

    @Ameria, period pain is not supposed to be that bad. I would suggest you to visit an OBGYN just to make sure you don’t have any conditions or issues that is making your periods worse like endometriosis.

  33. Myphaty
    Myphaty December 17, 07:35

    hi! I’m fatima and i have sickle cell anemia too. I undergo all these symptoms and it sucks. But my question is what’s the best and successful way to stop or reduce these pains? Of course I’ve tried all those pain killers (ibuprofen and rest) but to no avail. Please help!!!

  34. ASHLEY
    ASHLEY January 13, 07:51

    Your comment..I AM 15 AN HAVE NOT STARTED MENSTRUATING IS IT BECOS AM SS

  35. Sickle Cell Warrior
    Sickle Cell Warrior Author January 22, 19:21

    It could be. My periods didn’t start until 17. But don’t worry, it will come…and you will wish you didn’t have periods:) Just be patient. Some women are late bloomers who turn into a beautiful rose.

  36. Indigo stArseed
    Indigo stArseed February 22, 20:42

    I’ve taken blue green algae and monatomic gold in combo and I have very few crisis mAybe once a year if that hope this helps it’s a little natural remedy I’ve come up with hope this helps.

  37. SuzzyM
    SuzzyM May 27, 08:05

    I used to have crisis every period but I’ve learned to minimize thst. Before my periods I double the dose of folic acid , drink only warm fluids, take everything slow, rest more, reduce house work, don’t exercise, increase fluid intake, remove all sugars or sweets as they cause inflammation. Take b complex and drink a pill or two of ibuprophen before during and after periods. Drink juice made with beets carrots lemon apple n cucumber or spinach daily. I haven’t had a crisis due to periods in more than ten years.?

  38. Shan
    Shan May 30, 05:59

    I never found out I had sicke cell until I was about 29/30. I was also already married and had a child. By this time I had already been hospitalised for my period before and couldn’t understand why as it was just a period. However the pain had me screaming, crouch in pain, overheating and wanting to faint if standing. I was on the pill from 17. Ohh your period pains would be less painful. That was a lie. When u have a baby your pain would be less. That was also a lie. I am now on the injection Depo Provera I still get my period longer cycles but most times no pain however i bleed for 2 weeks or more.
    There were times I would be all good then I would start hopping because of pain in my legs but never understood why. Didn’t have my period and it wasn’t about to come because most times it would be skipping. Sometimes 3 months no period. I couldn’t understand why. Didn’t damage my leg wasn’t my ankle I sprained before.
    I saw a hematologist and things were explained to me.
    There is a lack of awareness here in the Caribbean. I am sure some people has it and don’t know. Some be in pain and not sure why.
    But this year on Jun 19th my Whatsapp will be lighting up to make my contacta aware. And in September they will be more aware becuse I will help to educate them.

  39. Jumik
    Jumik June 15, 05:16

    Your comment..Many thanks goes to Sam that introduced this website to me,this is what i have been passing through so many year’s and month’s.

  40. Anthony UK
    Anthony UK June 25, 00:53

    Hi, my daughter Antonia is a SS Warrior living in the UK. I came across this website while in A&E with her. She is 15, in crisis and on her period as well. Reading this blog and comments has informed me a lot. I will now go into Antonia’s next appointment with a lot more information. Thank you

  41. Patty
    Patty July 08, 07:07

    My daughter is 12 has sickened cell ss. She takes hydroxurea. She just started her period….any help to get her through this is greatly appreciated.

  42. Sickle Cell Warrior
    Sickle Cell Warrior Author July 18, 02:56

    @Patty, My period has always been a trigger for sickle cell pain for me. I think it’s because of the blood loss and hormonal changes that occur during your period. It’s essential to improve her diet and keep it as healthy as possible. Increased protein intake during her period week. I will post your question on the FB page as well so that the group can give you tips. https://www.facebook.com/SickleCellWarriors/posts/10154795007592849

  43. Sickle Cell Warrior
    Sickle Cell Warrior Author July 18, 03:20

    @Jumik, I’m so glad you find it helpful. It’s a labor of love.

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