Painful, nonstop, heavy bleeding that nothing helps
Posted , 3 users are following.
Hi everyone! Sorry for the long post but I'm really getting desperate for any info or help you could give me.
I'm 25 years old, and I've had severe menorrhagia and dysmenorrhea since my mid-teens and it's been getting worse ever since. My periods typically lasts anywhere from 10 to 40 days, are so heavy that I have to use the largest pads possible and change them ever couple hours or so, and the pain is so bad sometimes I throw up from it and can barely stand up. I recently started a new job and have already taken 2 sick days because of period and can't risk getting fired because I can't show up to work. My social life is suffering because when I'm not at work I'm in bed curled up in a ball. I've been to the ER 4 times in the past year because of dehydration from the blood loss and received IV fluids each time. All my tests have come out normal (blood tests, 3 ultrasounds, pap smear, etc). My doctor suspects it could possibly be endometriosis based on my symptoms and that my mom and maternal aunt, grandmother, 2 great-aunts, and great-grandmother had it, but didn't want to do the biopsy to confirm because she said the treatment course would not differ from what we're already doing.
I can't take estrogen treatment options because of chronic migraines, so that leaves me with progesterone only options. I've tried all progestin pills that my gyn offered (norethindrone, norethindrone acetate, the mini pill, etc), all of which did not improve my symptoms in any way and only gave me unbearable side effects (severe mood swings, nausea, vomiting, weight gain, acne). Next we moved onto the Nexplanon, which I've currently had in for almost 6 months. Since getting it inserted I've only not had my period for 2 non-consecutive weeks, and my periods are just as debilitating as ever. I have an appointment in February and if it doesn't start to help by then I'm getting it removed.
That leaves me with only 2 other options. The Depo-Provera shot my doctor highly suggests against because of side effects, and I agree. Then the only thing left would be the Mirena IUD. I really do not want the IUD as I'm mostly concerned with the insertion process (my uterus and cervix are abnormally positioned, and pap smears/pevlic exams are excrutiatingly painful) and that it will be futile - no other hormonal options including the other implant have ever helped me. How likely is it that the Mirena would work when everything else has failed?
I'm desperate to get my life back, so I've been looking into the endometrial ablation procedure (like the Novasure). I've mentioned this to 4 doctors over the last few years (2 PCP and 2 GYN) as well as nurses at the offices, all of whom refused to discuss it because it means I will not have children. I do not want to have children - I really dislike children and don't like to be around them. It sounds mean but that's the truth - I joke with friends that I have no maternal bone in my body. I never have, and the older I get the more I am certain of this. I've been in a serious relationship with my boyfriend for 5 years and have been talking about getting married in the future, and we have both shared the sentiment from the beginning that we do not want to have children. I've explained this to the doctors and I've gotten responses such as "all women want children" to "you're selfish" to "you're mother will not forgive you you for not giving her grandkids" to "life without children is lonely and depressing," and all saying that I am not capable of making the decision not to have kids. Has anyone had any experiences or opinions on the ablation procedure? I really think it could help me (as does my mother who is an ob-gyn nurse and a close family friend who is an ob-gyn NP) so I'm extremely frustrated that the reason I'm being given for not discussing a potential treatment is essentially "everyone has to have kids."
Again, sorry for the long post, but my quality of life is getting so terrible since I'm basically in pain and bleeding to death 24/7 and I'm desperate for answers. Thanks!
0 likes, 4 replies
tricia51298 KayMac1230
Posted
Wow. Are they sure you don't have uterine fibroids. I had that and had your exact symptoms. I had the fibroids removed it worked for a while but I now again still have heavy long periods. It's awful. But nothing like before. Have you ever tried Tranexamic Acid pills when you're bleeding? they help me a lot. I'd try the mirena it does work good for a lot of people. But you have to give it up to a year to fully start working. If after that time I'd ask again about the ablasion. My doctor, gyno, said both would be good options for me. But I am 20 years older than you. I feel for you sweetie. I hope you can find something to help. Keep updating 😊.
KayMac1230 tricia51298
Posted
Thanks for your input! I apparently have no fibroids - I was surpised at that like you. I also forgot to mention I did have a couple ovarian cysts on one ultrasound but not on the next one and my doctor doesn't feel I meet the symptoms of PCO. My doctor doesn't want me to try the tranexamic acid because I have a strong family history of blood clots (also why I can't use estrogen). What you said about the Mirena taking a year is similar to what my doctor said about the Nexaplanon so I'm going to stick with it at least until I get more input at my next visit.
tricia51298 KayMac1230
Posted
KayMac1230
Posted
Small update: diagnosed with hypothalamic-pituitary-adrenal axis dysfunction. So it's more a neurological/endocrine problem than GYN. Went to the ER again for severe dehydration since I've had my heavy period since November from the nexplanon, and it's getting removed next week. Terrified to try the Mirena because of the side effects and insertion and I want to quit hormones. Might try the micro-nor again as it helped for a couple months but my old GYN did not give me the instructions to make sure to take it at the exact same time every day.