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15068146 tn?1438223148

Adhesions, but no endometriosis?

Hi. My name is Jessica and I am 24 years old.

I have always had painful and heavy periods. I started my menstrual cycle when I was 11. When I was 18, I started on birth control pills. They helped with my heavy periods and I no longer had any pain. After struggling for 6 years on the pill (and being on numerous brands and all different hormone levels), I opted to go the hormone-free route. I cannot tolerate artificial hormones at any level (just like my aunts). I was having periods every week, spotting in between, menstrual cycles that were short and then long. I could never pinpoint where I was at in my cycle or when my period was coming. My body had a mind of its own and it was miserable.

I decided in February of this year to get the Paragard IUD since it is the only hormone free birth control method. It has worked wonders. I was having perfect cycles. 28 days long, 5 day periods that were moderate, not heavy and not light. I could pinpoint to the day when my period was arriving. It was fabulous.

At the beginning of May, I started to have severe pain in my right side, right about where my ovary is located. I thought maybe I had strained something or maybe my Paragard had shifted, so I was going to give it a week. If the pain was still there in a week, I would call my gyno’s office. A week later, the pain was still there. I called and they offered to have an ultrasound done to check the placement of my IUD. When my results came back, they said everything was perfectly in place, but that a 2.6 mm complex cyst was discovered on my right ovary. They say they come and go through the menstrual cycle, but to me this seemed abnormal. I had never had pain from one before, but maybe that was because I was on the pill. They wanted me to do “watchful waiting” and come back into the office in 6-8 weeks for another ultrasound to see if the cyst had grown, shrunk, or disappeared. A week later, I couldn’t bear the pain. I could not wait the 6-8 weeks until my next appointment. I called and they insisted I waited until the next week and call back (I was just about to start my period and they wanted me to wait and see if it went away with it). I was doubled over my entire period and it felt like someone was sticking a hot iron into my left ovary. I couldn’t wait for it to be done. I gave them a call and they had another ultrasound scheduled for me for the following week. When my results came back from that, they said my right cyst had disappeared, but a 2.1 mm complex cyst was growing on my left ovary. I had an appointment scheduled to see my gyno about the results.

When I went in, we went over everything: my right cyst, painful periods, left cyst, right cyst disappearing, yet I was still having pain on my right side. He said it sounded like endometriosis. Both of my aunts have it and I was sending up so many red flags and showing symptoms of the disease. He wanted to schedule a laparoscopy. I had already prepared myself for this diagnosis.

Last Friday I went in for my surgery. I was told that I had my appendix and adhesions removed (one was actually connecting my colon and bladder together). He said he took a biopsy while in there and was waiting on the pathology report. I went in yesterday for my follow-up and he told me that the biopsy from my adhesions came back negative for endometriosis. I was baffled. I thought for sure this is what was going on. I asked how the adhesions and scar tissue got there and was told it may have been from endo trying to start, but was somehow halted. He wasn’t sure. He also briefly mentioned that it could be from fibroids, but I had never heard of fibroids throwing off adhesions. I thought maybe it was something that started right before I went on the pill and maybe somehow flared up again when going off of the pill and switching to the Paragard since it’s hormone free? I didn’t really get a straight answer.

I am frustrated. Frustrated beyond belief. I just want an answer. I have been in pain every day for the past 3 months, went through surgery, and still have no idea what is wrong or where these adhesions came from (this was my first surgery, so I know they aren’t from a previous one). I have talked to a friend of mine and one of my aunts about what they think. Both of them have seen specialists who were able to work wonders and help them with their endo. I’m not saying I want this disease by any means. I just feel like I got a misdiagnosis. My aunt brought up the fact that endo can grow deep in the tissue of your uterus and can go undetected if not truly searched for. I also found an article about deep endometriosis and how laparoscopic surgeries do not pick up on it. I went into surgery on the last day of my period and I have no idea if that affected anything. I also know that endo can grow in all different forms and can easily be looked over. My next step is to hopefully get in contact with a specialist.

I just wanted to reach out and see if anyone else has had this happen: You have all the signs of endo, have your surgery, and the doctor and pathology report say there is no endometriosis. I am open to any thoughts, opinions, and experiences. Anything will help at this point.
10 Responses
14776903 tn?1437687992
Adhesios can also be a result of unreated STI(s) or pelvic inflammatory disease.

Pelvic inflammatory disease is most of the time a complication of STI(s), such as chlamydia and gonorrhoea. However, in rare cases you can get PID following BV (bacterial vaginosis) or when E.coli bacteria enters your upper genital tract.

Both STIs and PID can cause pelvic pain and other symptoms, such as abnormal vaginal discharge.
Avatar universal
this definitely sounds like endometriosis to me...did you see your regular gynecologist? I would suggest you get copies of all notes, surgical report, pathology report ...everything...as well as what you just shared here...have it evaluated by an endometriosis excision specialist (they usually do this for free) I am thinking this dr. just did not know what he was looking for as endometriosis can have 6 different varieties in appearance and if they are untrained they will not know what they are looking at...and if the disease is in fact in there it will continue to cause problems...I understand your frustrations although my journey has been different...but just because pathology did not show it doesn't mean they didn't just submit tissues that it was not at....and it's elsewhere in the pelvis...I would NOT accept this as the answer...many Dr.'s like to dismiss us endo gals but times are changing and we are no longer accepting this because of the vast knowledge we have and the fact that only an endometriosis excision specialist should be dealing with our disease...so get another opinion from a true endometriosis specialist and the fact that you were made to wait another week while in pain would make me find a new dr...as you were dismissed and it is their job to help us and if they can't then they need to send us to someone who can! so how is your pain now that the adhesion's were cleaned up? I would suggest you go here to gain accurate and current information on endometriosis...
http://endopaedia.info/
Avatar universal
I want to add one more thing...I was your age when I was seeking help and it took 13 years before I finally got a dr. to hear me and actually go in and look...by then I was stage 4 with frozen pelvis and the consequences have been devastating...so please do not be dismissed, do not allow them to take organs, tell you to get pregnant, put you on harsh drugs like lupron because these will not cure endo, they are still not even sure there is a true cure for endo, but there is an 80% chance in the hands of an endometriosis excision specialist! Be your best health advocate...push to find answers and I will help you in anyway I can...pm me if you'd like!
15068146 tn?1438223148
I have only ever been with one man. Both of us were virgins at the time and I have been in a relationship with him for over 7 years. I have also been getting regular pap smears done every year since I was 18, so for 6 years now. I know it is not from an STI.
15068146 tn?1438223148
Thank you very much for all of this information! My regular gyno was the one who has been dealing with all of this from the beginning and the one who did my surgery. I did just get my pathology report and all of my medical records from all of my visits with him picked up today. I will post them in a different comment.

I have currently been seeking out a specialist. It seems the only way both of my aunts and good friend got diagnosed with their endo and got it properly taken care of. My gyno specializes mostly in menopause situations, so I had a feeling him doing my lap surgery was not a good idea. I felt he was not trained enough to know what to look for since it does come in so many different forms and can hide anywhere.

My pain has been fine since surgery besides the usual incision pain and some pain internally from things moving back into place. I have had a bit of a deep pulling sensation/pain on my right side, but I'm hoping it's just things settling down again. I am currently waiting another 4 weeks to go back for my final checkup before I can get my IUD put back in.

Like you said, I definitely do not want to wait. I am doing my best to find someone good to get in to talk to so that I can get a proper opinion from someone who knows what's going on. I refuse to let this go any longer without answers.
15068146 tn?1438223148
From my medical records:

My pain started on May 7th. One week later on the 14th was when I called about my pain. One week after that on the 21st was when I went in for my first ultrasound. I received my results on the 26th.

My ultrasound took place 2 weeks after my period ended. My uterus measurement was 8.3 x 3.0 x 4.3 cm. My endometrial stripe was 7 cm. No focal myometrial lesions were found. My right ovary measurement was 3.5 x 2.0 x 3.7 cm. A complex cyst with internal echoes measuring 2.6 x 1.7 x 2.0 cm was found on my right ovary. Vascularity was demonstrated. My left ovary measurement was 2.9 x 2.1 x 3.1 cm. It contained a small follicular cyst. No significant free fluid was found in my pelvis. They wanted me to follow up in 6-8 weeks.

Since my pain was so bad, I called back on the 28th and asked what I should do in the meantime. I was going to be starting my period the next day, so they told me to call back when it was done to see if the cyst and pain disappeared with it. On June 4th I called when my period finished. I was still having pain, mostly on my right side. They scheduled a second ultrasound appointment for me rather than having me wait another 4-6 weeks.

On June 9th, I went in for my second ultrasound appointment which took place 6 days after my period ended. I received my results on the 15th.  My uterus measurement was 7.7 x 3.1 x 4.1 cm. My endometrial stripe was 6 cm. No focal myometrial lesions were found. My right ovary measurement was 2.7 x 2.2 x 1.9 cm. It contained subcentimeter follicles, but the large cyst had disappeared (even though I was still having severe pain on that side). My left ovary measurement was 2.3 x 3.8 x 2.1 cm and it contained a 2.1 cm dominant cyst. No significant free fluid was found in my pelvis.

On July 24th, I went in for my laparoscopy. My pathology report reads:
- Received in formalin additionally labeled “cul-de-sac” is a 1.0 x 0.8 x 0.3 cm portion of tan-purple fibroadipose tissue. The margins are received unoriented and fragmented.
- Received in formalin additionally labeled “right pelvic wall” is a 1.0 x 0.8 x 0.3 cm portion of tan-purple fibroadipose tissue. The margins are received unoriented and fragmented.
- Received in formalin additionally labeled “right perivascular biopsy” is a 0.6 x 0.5 x 0.3 cm portion of purple tan thickened fibroadipose tissue. The margins are received unoriented and fragmented.
- Received in formalin additionally labeled “appendix” is a 7.4 cm in length by 0.6 cm in diameter appendix with attached 4.2 x 1.2 x 0.7 cm mesoappendix. The margins are inked black. The surface is purple tan and congested. The lumen is pinpoint and empty. No discrete masses or lesions are noted.

Biopsy final diagnosis:
- Cul-de-sac: fragment of mesothelium with reactive changes and acute inflammation
- Right pelvic wall: fragment of mesothelium with reactive changes and acute inflammation
- Right perivascular: fragment of mesothelium with reactive changes
- Appendectomy: appendix without diagnostic histopathologic abnormalities

Again, my doctor said no endometriosis was detected in my pathology report from the biopsy taken. He isn’t quite sure where the adhesions have come from. He briefly mentioned fibroids, but I have never heard anything about those throwing off adhesions. This was my first surgery, I never had appendicitis, no bowel infection, no Pelvic Inflammatory Disease. He said it could have been the start of endo before I went on my birth control pills which may have halted the disease. I am using the Paragard IUD now which is non-hormonal, so I don’t know if it has flared up again or I am just crazy. I still have no clear answers, so it’ll be off to a specialist soon.
136956 tn?1425609872
Endo can be found within the adhesions and it is possible that your surgeon might not know the many faces/colours of endo. You really need to go see an endo specialist.

Avatar universal
agree with ticked! get to an endometriosis specialist!
15068146 tn?1438223148
Thank you both! That is my next step! Looking into that next week. :)
Avatar universal
I also wanted to comment during my process of trying to find out what was wrong...and then years later when I got smarter about this disease and got all my medical records...my gyne also tested me for sexually transmitted disease EVERYTIME...even though I had been with the same man for many years and had only been with a few others...so just get to the specialist and don't waste your time with this gyne...he can't help you! Hang in there! If you keep seeking and get to a specialist you will get this resolved! Good luck! Don't give up...I saw 100's of Dr.'s before finally getting the help I needed! and it took years and years...so that is why I stay in these forums to help you younger gals to avoid all the pitfalls I had to endure!
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