Let me preface this by saying that we’re facing a shortage of doctors here, and “just swap doctors” is not a possibility.
My (29F) cramps have always been bad since I started my period around 12, but never especially heavy. Over the last 5 or so years, the pain has become debilitating to the point of missing work. The pain extends to my inner thighs, lower back, and even up my abdominal wall. I have an incredibly high pain tolerance, and the cramps have brought me to tears many times.
My OBGYN prescribed 500mg Naproxen which takes the edge of for 8ish hours, but I have to take it at the very first twinge of pain. Once full blown cramps start, it’s basically impossible to stop the pain. After my tubal ligation, I asked if she saw signs of Endo and she said no.
Unfortunately she retired, so I’m back with my regular GP/nursing team. I asked if there was a way to delay my period for my honeymoon. The answer is no, because I have a blood clot history, so I can’t have birth control or any hormonal medication. I asked the nurse practitioner what I can do to help with the pain and she said “have you tried a hot water bottle?” (bitch please đ) Her final diagnosis? “Some women are just like that”.
I want to speak with my GP but I want to bring some sort of plan/request/solution. If the OB saw no Endo, what else can we look for? What options exist to reduce my pain? I’m desperate. My next resort is to beg for a hysterectomy.
Comments
Ask for an ultrasound to rule out adenomyosis.
Has anyone brought up Adenomyosis?
I suffered with this until age 50. Seriously it was horrible and I canât believe I functioned as long as I did. Read up on adenomyosis. It exactly matched my symptoms but no one ever tried to diagnose me.
It is difficult to diagnose but can be highly suspected using advanced imaging that most doctors will only do if youâre trying to get pregnant. Hysterectomy is the treatment.
I never wanted kids so if someone had simply taken my self reported pain and heavy bleeding seriously during the decades I begged for that, I could have had this treatment much earlier.
Once I finally got the hysterectomy- not for suspected adenomyosis but for fibroids and irregular bleeding, pathology confirmed adenomyosis. I truly regret that I was unaware of the condition and didnât push for a diagnosis.
This happened to me starting about 4 years ago. I had to call into work almost every month in 2023 because the pain was so bad, and no pain meds would help. I neglected going to the dr for way too long but I finally got a vaginal unsound and they found polyps. I had them removed last year and my cramps pain went down by about half with also using otc pain meds. At least workable for now đđđ
Have you considered endometriosis?
My periods were so bad that I couldnât go up stairs, I specifically remember one time it was so bad I couldnât move and I was in the middle of the stairs- my mom had to give me a pillow to sleep on the stairs with. I also had a super heavy flow
I went on birth control at 17 and was on nexplanon for years and I brought up endometriosis to my doctor and we did a surgery and found I do have endometriosis and it was attached to my colon.
The surgery just to see (they can remove endometriosis while they are in there) is pretty invasive and is a rough recovery but I think itâs worth it.
Iâm sorry you are experiencing this, itâs not fair or right. They should have explored causes before giving you meds.
I just learned that Premenstrual Dysphoric Disorder (?) (PMDD) is a thing. I was recommended to take the problem to the psychiatrist who prescribes my psych meds, so maybe if your GP can’t or won’t help you, you might be able to find a psychiatrist to help?
Edit: oh, yikes, I forgot to mention the most important thing! I used to have the same problem, with really bad pain, but it stopped when I started taking lots of vitamin C daily. I barely have pain anymore, and I’m looking into PMDD only for emotional issues.
I’d ask for the hysterectomy over and over until they give it to you. I know you say you aren’t doctor swapping, but if you’re looking for an OBGYN to do your hyst, it may be worth it to travel to a bigger city nearby and try the docs there until one says yes. It’s probably going to be a long process full of rejections, but it’ll be worth it once you find one and get the hyst.
I had a hysterectomy. They didn’t find any issues, but I had extremely heavy periods and godawful cramps. Every. Single. Month. After two kids, and having already had a tubal, I yeeted my uterus and have never been happier.
Please take this with a grain of salt as I donât think my cramps are as bad as yours and this isnât based off of any medical advice – I started taking iron pills with vitamin C pills for my hair and noticed that my cramps became way more manageable. I donât know why this has alleviated my cramps and since Iâm not even anemic there is a good chance that I shouldnât be supplementing my iron intake. Or maybe itâs the vitamin C pills not the iron pills thatâs helping my cramps? IDK
It depends on the details but You usually canât use oestrogen after a blood clot. But you can usually still have a nexplanon or a mirena or the bc pills without oestrogen. And if you have had a tubal already then an endometrial ablation might be an option too.
https://womenandbloodclots.org/birth-control/
Have you ever had a transvaginal ultrasound?
If no, then that could be a good step to take.
I also had debilitating pain (when my period hit I had to get home, no matter where I was, because I had 20 minutes before I wouldnât be able to walk) and it turned out I had an endometrial cyst on an ovary, discovered with a transvaginal ultrasound. I spent a couple of years having regular check ups and discussing with my doctors (two amazing women), and from them I learned that without exploratory surgery a transvaginal ultrasound is (in their opinion) the best monitoring/diagnosis tool.
Itâs different to an abdominal ultrasound.
(I also had blood work done to rule out any tumour markers early on, thatâs another thing to check.)
My cyst was 5cm in diameter when we discovered it, it was whatâs called a âchocolate cyst,â which means blood filled, and didnât disappear on its own through multiple cycles (regular checkups to monitor it). Without surgery we canât determine endo, and I requested no surgery so my doctor worked out an alternate plan, but she was 99% sure it was an endometrial cyst.
I shrank it with medication, and then with consistent (no breaks for the fake period) birth control use it disappeared. I know, thatâs not supposed to happen. My doctor knows thatâs not supposed to happen. So I hope I donât get any heat for saying that it did. My doctor said, âI donât know how it happened, and I donât care, itâs definitely gone.â
I understand you don’t have a lot of options for doctors, but if you can find your way to an endometriosis specialist, they can be life- changing. I had a great one at Stanford but ultimately needed a hysterectomy. A good friend went to one in Washington state. Sometimes, you have to travel to get to the best ones and even pay out of pocket, then get reimbursed if possible , because a lot of the good ones don’t work with insurance. The reason for that is that insurance may only reimburse for the cheaper, less comprehensive treatment rather than the treatment they offer. But I can attest that the care I got from my specialist was SO much more effective, it was worth it to get my life back.