I want to start this by saying that I wish I had done things differently.
Not that it would have a different outcome – but, who knows? or it would have been discovered sooner. Seriously though – I can’t allow myself but a brief thought to even think of the “what if’s”. I’m not going to sit and cry and get angry and ask, “why me?” because the answer to that is – Why anyone???
I would have to say that my story starts back in 2000. But the fact that we hadn’t used birth control since our son was around 2-2 ½ and he was about 9 at this time – I think it started even earlier. But what I call “period problems” started back in Spring of 2000. I would start my period and the heavy bleeding would happen for about 2 weeks – and it would start again in about 2 ½ weeks. The heaviness didn’t concern me – but the fact that it went on for weeks did (not to mention extremely annoying!)
My ob/gyn was located about 30 minutes away – but it wasn’t the drive that was so difficult – it was getting in to see him – I had tried to make an appointment but it had to be scheduled a month out so I told them I’d see someone locally. Let me interject that I had been very good at getting yearly paps done and none had come back with abnormal results.
I had asked my co-workers about other doctors in town and had a few recommend this woman doctor (no feminist judging – I had just only been to male doctors) I went in – told her the issues I had been having – along with a lot of pain with cramping and back pain. (I wasn’t bleeding at the time) She had me do a pee test and said I had a urinary tract infection, a bladder infection and kidney infection (which was a shock to me since I had NEVER had any of those before!) she prescribed me some meds and said to come back if not better in 10 days.
So I was back in 10 days.
She had me do another pee test – I told her I was still in a lot of pain and she proceeded to tell me that I am only there to seek medication and she’s not going to give it to me. (Unfortunately at that time I was still young and would shut up when people talked down to me so I didn’t speak up or scream back like I wanted to) I told her that I wasn’t – that I didn’t go to the doctor unless I really felt like it was bad and I had to. She told me my white cell count was a little elevated but she wouldn’t give me anything. So I left.
I later made an appointment with my usual doctor – again, having to wait about a month – so the bleeding went on again. By the time I had my appointment it had been happening for at least several months. I told my doctor – who listened to me and showed concern – he ordered a slew of tests – including my first ever transvag ultrasound – xrays – and I don’t even know what lab work. I appreciated that he listened and agreed it wasn’t right and was looking for what was wrong.
He had decided the best route would be a hormone induced d&c – so basically I took about 2-3 months’ worth of birth control pills (within 2 weeks’ time) – followed up by 5 days of hormone pills – he said to be prepared because it would be a massive bleed when I finished with the medications. I wasn’t looking forward to it happening – but I didn’t have to worry about it – because it never did.
Leon urged me to go the doctor since it didn’t happen – but within just a couple week’s we were leaving to take the kids from church on our first trip to church camp – and being a teen girl who went to camp every summer – having your period is not something you want to happen. So I decided to wait until I got back from Texas.
It only took 2 days.
I woke up in the middle of the night thinking I had to go to the bathroom – which was right across the hall from our bedroom. I got up – hurting quite a bit – I tried to sit down and realized it wasn’t going to happen. I could barely move. Hunched over in excruciating pain I made it across the hall, flipped on the light and told Leon I needed to go the hospital because I thought I was dying. It was about 3am – by 9 am I was out of emergency surgery for an ectopic pregnancy. I had lost a baby (that we had tried so desperately to have for so many years as well as my right fallopian tube.
I had the surgery at Bates Hospital here in Bentonville and the doctor who performed the surgery that night became my follow-up doctor for the next year or so. When my period resumed – it was what I would think is what other people’s normal is – but for me, it was less than normal – a lot less blood, clots, pain and lasted only a week. Until the next one – it was back full force like before – I went in to see the doctor and he prescribed some hormone pills (just as I had before) and it made it stop – less than a month later, resuming – so I did this merry-go-round a couple times before Dr Papageorge asked me if we wanted to get pregnant again because it would determine the route that we would take to make all this stop. Of course we told him yes…..we had been praying for a baby girl for so many years.
So he placed me on Clomid – a fertility drug – and I took that for several months – but oh goodness, it really messed with me and I finally had to stop it. A few months later though, we found out that I was pregnant!
After the pregnancy – I had another pap – again, no abnormal results.
And that was my last one until 2008. I had 3 weeks back to back of church camp and although my periods were no longer 2 weeks long and less than what they were – I didn’t want to mess with it at camp. I went in for birth control pills to take for a couple of months so I could skip my period while at camp. Again, no abnormal results.
But……that was the last pap I had until last week.
I don’t even remember how many years between 2008 and 2014 that I have had period problems again – it started out with cramping – and then it got heavier large amount of clots, painful periods – lots of cramping – and back pain. I would say at least 3 years – the past year being the worst pain-wise. If it wasn’t for working at home – I would have probably lost my job because I’ve had days where it hurt to function – I learned that taking a couple of Tylenol or ibuprofen everyday it would make it tolerable. This year, the pain in my lower back was so bad I would have to start taking it about a week before my period started, the week of and then at least several days – if not the week after. So most of the time, I was feeling bloating, pain in the lower back or cramps. It hasn’t been fun.
So – I know what you’re thinking – why didn’t I go back to the doctor??
I don’t know!
Well, I guess I do – I was embarrassed to go to another new doctor – my husband would always tell me it’s not a big deal – but being naked from the waist down, your booty so close to the edge of the table you’re one slight move from being on the floor – and your feet in stirrups and your knees spread eagle – oh, and a spotlight right on you – yeah….not really something to look forward to (and if it is – you have serious issues!) but all kidding aside, I know, it’s a serious thing – and I know, I should have been going. I also didn’t realize just how not normal my normal was – until I opened up about it to some friends both online and in person.
They had urged me to go to the doctor – and I tried to get ahold of Dr Papageorge and found out he was no longer in the area – so then the hunt for a new doctor began. I asked around (leery of my first experience of this!) and was recommend to Dr Amber Sills. I had decided to make an appointment – but I procrastinated and then my husband left his job after almost 24 years – and we no longer had insurance. During the time my husband has been home (since October last year) I think he could see that I was in pain every cycle. He brought me home some Midol Extended Relief one day and I found that it worked pretty well at lessening the blood flow and the pain was easier to handle.
We finally got our insurance back in May, I think – and after talking to my friends again and hearing from my Dad’s sister about my paternal medical history – which also included a lot of woman issues (my mom and sister had problems in the past) From talking about my symptoms they all made me think that maybe I had endometriosis. I finally made an appointment with Dr. Sills in August. I had noticed before – maybe earlier in the year – I really can’t remember – that when I sat with my legs crossed I would have an indention from my other leg on the one it rested on. If I wore short socks – it would leave the mark around the ankle – but my mark would be indented quite a bit and would stay there for several hours. At first I showed Leon and asked him if it looked like I had a dent – I thought maybe it was from having Rickets as a baby….or some weird “hey, look what I can do” thing – I never knew it was not a good sign.
I woke up at the end of July and where my foot had been resting on my shin in my sleep was a large round indention – this was so deeply indented that I realized that this was not some crazy quirk – it was something else. That morning we went to my mom’s and while telling her about it (the indent lasted a couple hours after I woke up) I grabbed my shin to pull my leg up to show her where it was and I left finger marks in my shin – it was like a memory foam leg…..and then I tried it on the other leg – and it did the same thing. She told me that it was something serious – a result of something and I needed to see a doctor. I told her I would since it was concerning me.
By later that night I had this rash all over me – later I’d realize it was not hives like I thought – but I got into chiggers badly at my mom’s. (Literally 75 bites on my waist, groin area!) I decided on Monday I would go to Well Quest here in town.
Last year I had went to Well Quest for blood work for anemia. I have had issues with anemia since I was young – and I have always been able to tell when my iron was low because I’d bruise easy and get cold and not have much energy. I’ve never had to be prescribed iron pills except for when I was pregnant with Natalie since Dr. Papageorge determined I was anemic.
This time, last July – I had no energy. I was always freezing – bruising – I literally could not get enough sleep. I’d go to bed as soon as all my childcare kiddos were gone home and I’d sleep all night and wake up exhausted. It took everything I had to function. I knew that my iron was probably very low. I was right. Leon had prepped me to let them know my history and to find out what was causing me to be so anemic – but I didn’t even get a doctor visit – I had the lab work done, they called and said doctor said that my iron was low and called me in a prescription for iron pills – 3 months supply and to come back for follow up testing. The 3 months ended just the same time as my husband’s job. So I didn’t go back – until this visit with the odd thing with my legs (which was pitting edema) I had also noticed that weekend that I was very bloated. So much that my jeans barely fastened – and were so tight – as well as my shoes – I had to wear flip-flops to church.
I meet with the doctor – who honestly – was nice – at first – but by the end he was blowing me off and I was so upset! I explained what was going on – his response was that “most women have swelling” and “it’s not the worst I’ve seen” and basically told me to take water pills. I mentioned I thought my iron was low again and I should have it checked. He looked at my chart and told me that I was in this time last year for same thing and how I never followed up like I was supposed to. When I told him that we lost our insurance due to my husband leaving his job – he made a sarcastic remark about “we have money for new phones (my phone – almost 3 years old and a shattered screen was sitting on the exam table) and money for this and that – but not to go to the doctor” I wanted to punch him so badly at that moment!! He told me someone would be in for a shot, they would have the blood drawn and then left – didn’t see him again (although I did call and complain about him today!!)
I got the results back later that next week. They said everything looked ok – I was surprised at this because I could tell my body was not happy about something!….not even considering the whole period problems! I brought up the iron – she told me that it was on the low end but not the lowest (37 and that 35 was lowest) and so I was within range. I asked what it was last year – she said 44 – and that it had dropped a few but again, within range – so encouraged me to “eat iron enriched foods” – I asked about the other numbers and she said it all looked good (I knew that they had tested for thyroid also) I asked about the pitting edema – I was told “it’s normal in women” I told her it wasn’t normal for me – and again was told to take some water pills.
I hung up the phone confused. One because my iron was lower than it was before when they prescribed iron therapy – but this time I’m just to eat iron enriched foods…..???? and plus it didn’t answer why my legs were doing this – and why I was so bloated. I didn’t buy the “most women do” theory. Leon made sure that I would ask questions and be open and honest with the ob/gyn when I went to see her. I promised him I would.
I felt like I was being a hypochondriac listing out all these complaints – I just knew she was going to look at me and say ok and brush me off. She didn’t. I went in for my pap – fully expecting the pap but not expecting her to do a uterine biopsy also. That was a first – and painful….and caused several days of back pain and cramps and bleeding (which I was just so happy about since the week before I finally stopped my period) After the biopsy she did a breast exam (I was somewhat expecting but not sure) and she told me that she was scheduling me for an ultrasound and a mammogram. I told her I almost called and canceled the appointment but she told me that she was glad I didn’t and that when I came back for the ultrasound the next week she would have the results back.
So in the meantime, I get to be all nervous. But again, I felt like either she would end up telling me in a few days that it’s all in my head – I have nothing wrong – or that I had endometriosis and worst case scenario – I would ask for a hysterectomy or whatever necessary to make all the pain and heavy periods stop. The nurse had asked me before the biopsy and pap if I was interested in just taking birth control to make the flow lighter – and I told her no – I hate taking medications and I didn’t want to have to remember to take pills – I wanted something to take care of whatever is wrong – not provide a cover for it.
So the wait began……