Sickle Cell & Your Period

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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.

52 COMMENTS

  1. 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. 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!!

    • Hi Nutty – I’m Tammy. I understand how you feel because some people don’t understand. Our doctor, not all doctors, just some of them don’t understand or care at all.

  3. 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!

    • Hi Bonnie, I’m Tammy – I understand how you are feeling. I’m just 36 and I come on twice a month. I hate it but I’m trying to see what I can do to stop my period from coming twice a month. It’s crazy to be bleeding every month twice! My body is in so much pain. What are you doing to stop your period?

  4. 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.

  5. 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.

  6. 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.

  7. 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!

  8. 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.

  9. 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?

  10. 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!

    • Hey girl – I’m Tammy, nice to meet you! I have really bad periods as well and hate it. Some times I bleed twice a month – girl that’s crazy! I wish my period was not like this at all. What do you do when yours comes on?

  11. 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

  12. 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

  13. 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?

  14. 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.

    • Hi my name is Tammy and I understand how she is feeling beause they tell me the same thing. My doctor told me to just call them when I come on and then gives me pain shots so I would have to see the hospital doctor.

  15. 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?

  16. 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

  17. 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.

  18. 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

  19. Now am getting worried with my menstrual cycle,it’s irregular with so little blood for the past three years and it’s not been like this before,is there any problem with me?,pls I need an answer

  20. 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!!!

  21. 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.

  22. Hello, I have sickle cell trait but I have some of the Symptoms, I have never had period cramps But I do have ovulation cramps that the Dr. Can’t explain and I can’t be in the cold it hurts so bad anything below 80 degrees Fahrenheit hurts my body, but the heat is heaven.

  23. Hi. My name is jasmine and I am a eleven year old girl and one day my period will start so I am just trying to get a few tips and some information on how I can help it and this is so helpful
    Thank you ,

    Sincerely, jasmine

  24. Hi, I am glad I came across this page because I am 30 and lately I have noticed that it has been three months and I haven’t had my period. I am just worried that I have reached menopause or is it just my condition? Because I generally do not miss my periods since they have been regular.

  25. Hi, I have sickle cell and I’m 36. I go into a slight crises when I have my monthly, but I get a lot of blood transfusions to keep my sickle cell under control. I hope they find a cure for older people or a support group.

  26. I just wanted to inquire about whether it is normal for us to run out of blood every time after menstruation? I always become pale, my heartbeat is fast, I lose my appetite for a week, and then take boosters then all goes back to normal. But every month my hb goes as low as 4 sometimes!

  27. Thank you! My 14 year old daughter has SS and has been having crises every month. You just gave me all the information I needed. I also want to thank the people that left comments about this issue because they were so helpful. You guys at sicle cell warriors are awesome.

    • Hi you are welcome! We know how it feels to be in pain and other things you can do when she comes is call on the doctor and ask them to just give her 3 pain shots so she would not have to see the ER Doctors.

  28. I am 30 and have been having severe blood clots during my period and get dizzy most of the time. This month I’ve been under a lot of stress and have been spotting the whole week and just started a normal period yesterday. Oh by the way, I got my periods twice this month. I have been told that I’m anemic and I am taking iron supplements but my worry now is I have cramps on my legs and arms. I have also been advised to go on a contraceptive pill. I’m now seriously considering it as this month has been hell.

    • Hi Riri – I’m Tammy and I understand because I have my period twice a month. I am in so much pain every time that it’s crazy. So what I do some times is call my Doctor to get pain shots and it helps because I’m not going to the hospital – that does too much lol! Not all the doctors, just some of them are nice as they understand sickle cell and period pain.

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