Could it be Endo?

Hi Diana

There are many things in your situation to which I cannot speak, such as your meds save that there is the possibility that they keep your symptoms from getting worse.

Ultrasound results aren't absolute. Only a laparoscopy is certain. Endo pain is not the same in everyone. I never had down the leg pain. Some months are better than others; be thankful for those no matter what is causing the problem.

Because of your youth it will be more difficult to get a lap done. Regardless of your age, you may go through a long series of tests on various systems if they haven't already made you do those. Endo symptoms are much the same as certain gastro issues.

No one here can say that you do or don't have endo, but your symptoms aren't inconsistent. Also, some women's endo isn't as severe as others. We've had a couple of women here whose endo was discovered accidentally during procedures for other things when they were 38-45 yrs old.

If you haven't already, start a diary of symptoms & take that to all your appointments.

I hope your symptoms improve.

Hi Diana,

First, I am sorry that you are going through this. Although only a doctor can diagnose you, your symptoms do sound like endometriosis. I will share my experience below, although everyone's is different.

Last August I began having pain in my uterus area. I had ovarian cysts in the past and thought that was the problem. I had the IUD so I did not get periods. My doctor removed the IUD to see if that would help- it did not. She did an ultrasound which showed nothing. The pain continued and I had other symptoms such as loss of appetite, fatigue, nausea. I struggled to get my doctor to take me seriously. I told her to test me for endo and she refused. She gave me the implant birth control. No change. I had a CT scan done, they found nothing.

I decided to see a OBGYN. He had me get on birth control pills and told me to wait 3 months to see if it helped. After one month the pain was so bad that I went to the ER. They did an ultrasound and found a tiny ovarian cyst. I insisted this was not the cause. I begged my OBGYN to schedule me for a laparoscopy and he agreed. In March I had my surgery and literally cried when I came out of surgery and the nurse told me they found endo. I was angry/happy/vindicated because no one had believed me and had wasted so much of my time by not listening.

Thankfully since my surgery I have recovered and so far the pain has not come back. I continue to take birth control pills which I am told prevent endo from returning.

Sorry for the long post but I found this forum in the beginning of my journey and it was always helpful to hear detailed experiences. I suggest talking to your OBGYN about a possible laparoscopy, or a change in birth control. Surgery has its cons: its expensive, there is a risk, recovery sucks!(ouch ouch ouch) but if it is endo then knowing is so worth it.

Please let me know if you have other questions. I will also note that I am one of the lucky ones who's problem was solved by surgery (for now) and I encourage you to read around some older posts because there are many different stories. 

Sending positive thoughts your way! <3 

Thank you both for your replies, I'm sorry to hear about your own struggles. I guess another visit to my doctor is in order, but I'm worried they just won't listen, or write it off as normal. I'll try to keep pushing them though, and see if anything changes in the meantime.

I honestly dont know what to think. I'm 28 and I already know I have PCOS which was diagnosed over 10 years ago. However, some symptoms I was concerned about were never really addressed. I need to pee often, but the flow is very stop start, and I don't always empty my bladder. I have issues with constipation, and pain when emptying my bowels. I get a deep pelvic pain during sex, not every time but in certain positions. My Cervical smears are excruciating and I bleed a lot! I have painful heavy periods ( which were always irregular due to PCOS but now regular due to lifestyle changes). Now they are every month for the first time in my life I'm aware that I have pain during ovulation, pain the 5 days leading to my period and all throughout. I also have a terrible twisting, sharp pulling pain on both my ovaries if I move in certain ways, or sneeze or cough sometimes. My PCOS ultrasound scans showed that my ovary may be adhered to my uterus. I've finally managed to get these symptoms addressed and am awaiting my laproscopy.

I wonder if these symptoms seem like Endo, from anyone who has it?

Diana,

Sorry you are going through this. I am also 20 years old and begin experiencing intermittent pelvic pain 3 years ago at any point during my cycle. My periods were 8 days very heavy with cramps as well. I too went on Junel Fe once the symptoms started but had to come off for unrelated reasons. Unlike yours, my pain did travel. I had ultrasounds but mine showed nothing, unlike yours. Like many other comments have stated, it is hard to get any doctor for perform an exploratory surgery on someone our age. My pain went away once I got an IUD; no clue why but it did. It made my period extremely irregular/unpredictable. Some months it comes, some it doesn't, sometimes its 4 days, sometimes its 15 days. My point is, this is really a trial and error game in my opinion, you win some you lose some. Maybe try exploring different types of birth control. I am currently taking medroxyprogesterone 2.5mg to correct my abnormal bleeding and I have had the Kyleena IUD for almost 2 years. Something as simple as the type of birth control may make a difference for you. Obviously I am not a doctor and we are not the same person, but this is what has worked for you so maybe it can give you some ideas to discuss with your doctor. Also- make sure you have a good GYN. The first one I saw told me i was having bladder spams... ya right. Find someone experienced in treating endometriosis.