My Story and Questions

[Sunny63416]

All the doctors I have seen have told me its all in my head. I am 33 year old white female. I inherited the trait from my mother. She occasionally has pain problems but NOTHING like I experience. I had a little joint pain growing up but nothing too crazy. Shortly after I turned 20, I got pregnant with my daughter and that's when everything really began. 4 months pregnant I ended up in the hospital with severe dehydration and a kidney infection. No problem right? Typical pregnancy related crises.

I told my doctor that I wanted to be treated as high risk because my sickle trait and he told me I had nothing to worry about because I wont experience anything unusual. Okay but please indulge me by giving me at least a couple extra doctors appointments! So birth went great.

Two years go by and I start getting this pain that started from right below my breast to my belly button. Its felt like someone kept stabbing me in my stomach! I am doubled over and I felt a little relief when I vomited but still went to the ER. Nothing wrong and all my organs look fine. Its all in my head. This keep up almost 2-3 times a week for a month. I cant do it anymore! I went to see a gastroenterologist who did CTs, MRIs, endoscopic procedures, blood work, and everything else. NOTHING WRONG! All in my head! Only half diagnosis of it might be acid reflux. REALLY?!?! Okay. Now I have watched my acidic intake and have really watched not eating anything that triggers the pain. Only rarely do I get the pain. Only every year or so now.

Okay now on to why I am really concerned for my health and my SST. Since I gave birth 12 years ago, onset of symptoms I never experienced before. I know! Pregnancy ruined my body and the way it functions. But worth it anyways! So one of the symptoms is intense cramps right before my period. Only in the last couple years has it gotten worse month after month. I get MAJOR blood clots coming out (and of course the normal uterine wall shedding) but I will spend one day before my period in INTENSE pain! Feeling like someone is trying to rip out my insides! I could only imagine something like trying to stick a quarter through a straw. And the clots can range from the size of an M&M to taking up half the size of the palm of my hand! And they come more frequent and bigger with how much pain I experience.

I really feel that SST has attributed to not only every crises I have had but the fact I feel anemic often. I have trouble with the lower and higher altitude situations. I also get easily dehydrated. My back hurts ALL THE TIME. I get winded easily. This blood clotting problem has also probably been the reason my husband and I aren't getting pregnant. 7 years no baby. (He has 2 of his own and I have one of my own). My previous husband 8 years no baby ( he had none).

I can take maybe doctors saying its not part of my SST but for them to tell us that our PAIN is all in our heads is ridiculous. I am not a junkie. I am not looking for pain meds. In fact, I don't like taking meds at all! All we want is a solution to stop living in pain!

Has anyone experienced any of the same symptoms?

Has anyone found anything that could help relieve pain, naturally of course?

Has anyone ever experienced infertility that has SST?

[SCSZoe Partner Sickle Cell Society]

Thanks for sharing your story, Sunny, and sorry that you're going through this. Regarding your questions, the fact is that even in 2016, little is known about sickle cell trait. What is known is this:

-If you have sickle cell trait, your red blood cells may sickle under conditions of extreme stress.

-Some people with trait will therefore experience pain, especially in the form of severe cramps.

-They don't know why some people with trait experience health problems, while others do not (like I said, there's still very little research in this area!)

-Drinking lots of water and avoiding activities in low-oxygen environments (e.g. scuba diving) and long-haul flying may help prevent the pain.

-There's little known about complications in fertility for people with sickle cell trait--these problems may be unrelated, because you said they only cropped up after your first pregnancy, and some women find their periods get A LOT heavier after they've had babies.

-^^however, maybe there is a link and it hasn't been fully researched yet.

As for natural remedies for pain relief, putting something warm on the area seems to work for a lot of people. Also, as I said above, make sure you drink lots of water, because if this is sickle-related, hydration can prevent cells from sickling!

[Linda0076]

The family member in our family which has trait has suffered with aches and pains throughout her life, now the children she has which have inherited the trait from her also suffer with pains, complain of being tired and on and off anaemia. Diagnosised with sc trait not ss and have symptoms. None of the other sc trait free family members suffered with these symptoms and from a large family. Only trait carrier and her children suffer with symptoms. Even though trait has been highlighted in doctors by the family member and question put to doctors about any connection the doctors flat out refuse to entertain even the thought /

[Linda0076]

Sorry, have just realised I'm referring to the blood group sickle cell trait as 'sc trait'. Is that the correct way for sickle cell trait? I know it's blood group AS that our family member has that suffers with many symptoms...(have posted earlier to this post relating to your condition which is same AS blood group which definitly for some is symptomatic)

[SCSZoe Partner Sickle Cell Society in reply to Linda0076]

Sickle cell trait is usually referred to as just "trait" (especially in forums like this where we know we're talking about sickle cell!) or AS. SC gets a bit confusing because SC is a type of sickle cell disease where the person has one gene for sickle haemoglobin and one gene for a condition called haemoglobin C. People who have SC do have sickle cell disease, although they tend to have fewer crises and less chronic anaemia than people with SS.

Sometimes it gets a little bit confusing with all the acronyms, so don't worry about asking questions like this! It's what we're here for

[DMBBMS]

Hi Sunny, apologies about very belated response.

If in doubt ask for HPLC or CE testing to estimate your Haemoglobin S  this can be between 28 % - 35 % and Haemoglobin F levels this can be variable but tends to be higher in sickle cell carriers, if Hb S is higher then you may have a co-existing haemoglobin interaction such as a Beta chain thalassaemia or variant. This will then need genetic testing in the form of globin chain analysis to confirm or rule out these conditions. These typical have a raised Haemoglobin A2 but can be masked in sickle cell carriers. If your Hb S levels are higher and your Hb F levels are low this can increase your risk of sickle cell episodes in oxidative stresses. If you haven't already speak to your local genetic counselling team to get some advice and appropriate testing.

Good luck and keep us posted

[Sunny63416 in reply to DMBBMS]

Thank you for that reply! I am going to check into that amd keep you posted!

[nicolefrancis]

I too have sickle cell trait and have pains in my legs and feet. Have u gotten your potassium levels checked

[Sunny63416 in reply to nicolefrancis]

I havent gotten it checked in many years but I know I struggle with low potassium. Hence frequent leg cramps!