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.
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jessicaanne23
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Well I've sort of been here, in a couple of ways. The first lap I had was done as an emergency - I was told that they found nothing at all, everything was normal. 18 months later I had another emergency lap because the pain was still so severe - they diagnosed the endo and put me on Depo Provera injections. This was ten years after the start of my symptoms and the gynaes at my local hospital were clueless. I got referred to an endo specialist and they did another surgery about 9 months later, while my periods were still stopped by the Depo. The specialist, who was extremely thorough, could only find lots of adhesions (Fallopian tube stuck to bowel and bowel stuck to itself) and two or three spots of endo. A few weeks after this lap, my periods returned and within a couple of months the pain was worse than ever. I asked my specialist if the Depo could have suppressed the endo and he said he didn't think so but he did another lap the following year and there was endo everywhere. He was shocked by how much the hormones had suppressed it.
There's a few things from your post that jumped out to me. Firstly, you need to get a second opinion, ideally from an endo specialist. This guy clearly has no clue what he's talking about. Adhesions don't form from endo "trying to start" - they form from Endo bleeding. If endo hadn't formed, it wouldn't cause adhesions. I've never ever heard of adhesions being biopsied to check for endo - endo is rarely in the adhesions, and you would have to be testing the exact tiny spot where a deposit exists. It doesn't make any sense. I've never heard of fibroids calling adhesions either. Very few things do besides endo - surgery can, pelvic inflammatory disease can, and a couple of other things. It does sound like they have missed your endo.
I think you have some good info and some slightly correct info which is making it harder to get your head round what's happened. Firstly, endo can develop in the walls of the uterus (it's called adenomyosis) but looking thoroughly won't find it - it can't be seen or removed. The only ways to diagnose it are if the uterus looks abnormal and bulky, if it shows up on an MRI scan, or if a hysterectomy is done and they biopsy it and check it (even then they could miss it if they don't test the right area). I've had my endo diagnosis and pain every day for 11 years, but adeno only showed up on an MRI scan for the first time in December last year. I have no idea how long it has been there.
Secondly, it it possible to have deeply infiltrating disease but this is usually very visible during a lap - it's not hard to see, but many gynaes will just burn away the surface if they see it.
Personally, I think the cysts are a red herring - they do sound like functional cysts cause by ovulation, the fact that you had one on the right then that disappeared and one appeared on the left support that. You probably get one every month and it has never caused you pain before.
One more thing - endo can be very hard to see. In some women it appears as black or dark red spots. In other women like me, it's orange, yellow or clear. My specialist gave me a DVD of the second lap he did. He told me there was endo all over the place - when I started watching the DVD I couldn't see any at all. Then he started treating it and I could then see what looked like tiny over every surface. After I saw that, I could completely understand why an inexperienced gynae would have missed it (especially as I later found out that I was on the table less than ten minutes and they only made one incision for the camera plus a tiny hole for the gas - they need to make at least one incision near your hip, preferably two, so they can insert instruments to move organs out of the way).
The only red flag is how intense the pain is and how quickly - did you have any symptoms before this started a few weeks ago (heavy or painful periods, bowel symptoms, daily pain, bladder issues)? Very severe pain with sudden onset isn't impossible with endo but in most cases it builds for a while - this severity and onset would usually suggest an acute issue (appendix, ruptured cyst, etc) but obviously they didn't spot anything on the scans or lap.
The adhesions suggest that you do have or have had active endo - you're not on any hormones so it's probably still there. I'd ask for a referral to see an Endo specialist and look online for suggestions of a good one (mine is a few hours away as that's the nearest good place). If you're in the UK there are a few national referral centres - one in oxford, one in London, and a couple of others I think - so you can be referred from anywhere. Your GP just has to specify where on the referral. If they won't agree, pay / save up for a private appointment - not sure of the current price, probably £150-£200 for a consultation. Make sure it's someone who would be willing to put you on their NHS list - this is the route I took to seeing someone at oxford initially, but this time I was referred back via my GP as the rules have changed.
A specialist may ask for an MRI which are hit and miss at best. I've had two - the first years ago showed nothing, just before they found all that endo in my lap. The second one was in December and they found adeno and my womb tilted back which is probably adhesions, but no sign of endo. I'm still waiting for my lap but I know from experience that my endo is pretty bad right now.
Don't give up - the average time to diagnose endo is 9 years from the start of symptoms so you've got a long way in a relatively short period of time. You just need to find someone who really knows their stuff and you will get some answers.
One more thing - I don't know what type of pill / hormones you tried but don't rule them all out. They're the best way to manage endo longterm and you can react horribly to some and not at all to others - it does take a lot of trial and error to find something that works without bad side effects, especially for some people. The mirena coil has a very low dose of hormones - personally I can't recommend it as it have me crippling contractions for months but many women swear by it.
I definitely want to get a second opinion. The only way both of my aunts and my friend got diagnosed with their endo was because of a reproductive endocrinologist. I thought the biopsy of my adhesions was weird too. I thought I had heard him wrong, but he clarified it 3 or 4 more times for me. It still doesn’t make sense to me. I am waiting to get the pathology report mailed to me to see what more it says. I know these adhesions are not from previous surgeries, because this lap was the first time I ever had been opened up. I also know I didn’t have appendicitis because the pain on my right side was from my cyst. It also is not from Pelvic Inflammatory Disease, I am sure of it.
I know cysts usually come and go during your regular cycle. Mine were just very painful. I do believe that the pills helped to suppress them to the point that I had no idea cysts were coming and going. They do say that most women will get cysts quite regularly through their lifetime and never even know. Mine were very prominent.
When I was talking to my aunt last night, she had also mentioned all the different forms endo can take. And if one isn’t trained to look for all of those different forms of endo, it can easily be overlooked. I had the robotic assisted excision of endo, so it was only one incision made through my belly button.
I have had this pain for the past 3 months, day in and day out. I have not had a break. It always intensifies the week before my period and carries though until about a week after. Then the pain tapers off for the rest of my cycle, but is still quite noticeable. I have not been able to exercise or ride my horse since the pain started at the beginning of May. Any jarring motion doubles me over in pain. When this pain did start, I noticed a deep pulling pain on my bowel. I know this wasn’t just from having IBS or a regular bowel movement. It felt like someone had a string around my colon and would yank hard every now and then. I also constantly had to go to the bathroom to empty my bladder. It would feel like it filled up in half the time as normal. It would ache and ache and even when I did go pee, my bladder ached so badly. Until I had full relief was when I felt a little bit better. My largest adhesion was removed from between my bowel and bladder. I asked him specifically after surgery if he had found one there, and he said yes. And my periods were the absolute worst. Like I said, when I was younger, I had heavy and painful periods. Then I started on the pill and I had no pain for the six years I was on them. Then I got the hormone free Paragard IUD and it all started back up again.
I was on about 7-8 different birth control pills, all different brand and all different hormone levels. I will never do them again. Both of my aunts who have this disease cannot do the pills either. Our bodies reject them. Every pill I was on would mess up my entire cycle. Periods every week with spotting in between is something I don’t want to go through again. I was talking to my aunt who has pretty much done all of the different treatments for endo and found that being pregnant or going into menopause was the most relief she ever got. When she was diagnosed, they didn’t have the IUD’s to help. She started to go the natural way to help combat this disease and got into meditation and acupuncture to help manage the pain. My doctor had mentioned if he found any endo that I could do the Mirena IUD. I would be fine with that since my Paragard IUD has been good to me. My IUD was removed during surgery, so I have to eventually get one put back in. he said since he didn’t find any endo, I’m clear to get the Paragard back in. But I have my doubts about that because it’s hormone free and it was just a few months after I got it that I started having severe pain. At least the Mirena would help balance the hormones out.
And thank you for your reply back. It means to much to be able to reach out to people having the same problems.
Regarding the cysts, it's very possible that they had nothing to do with the pain - I know it seems like they do because they were found when the pain flared up, I just meant you may have been getting one every month and not realised it until the pain began and it therefore seemed like the cysts were causing it.
I'm not familiar with the robotic surgery, as far as I know those devices aren't used over here - I'm assuming the device therefore has instruments to move organs out of the way since that's the only way to actually check whether there's endo there or not.
There's obviously something really unpleasant going on with your insides. If you tolerated an IUD then you might want to try the mirena but it can take several months to settle down. Or you could try implanon which goes under the skin in your arm - it's progesterone only like the mirena which may suit you better. I was on zoladex which puts you into a temporary menopause - it's only licensed for six months but it helped me so much that my specialist allowed me to continue to two years. Unfortunately that led to five years of menopausal symptoms and lost libido after I stopped - fortunately it's all sorted now but I've had to come off all hormones for two years, which has made my endo so much worse. Once I've had my lap I'll be trying to get pg (assuming I am ovulating) and if that doesn't work I'll be going back on hormones ASAP as without them the pain is unbearable.
Keep pushing for answers. In the meantime, are they giving you sufficient pain relief? There are many things that can help - also try an anti-spasmodic for the bowel issues. I used to get hideous cramps and then diarrhoea every time I ate until the adhesions were removed from my bowel - this went on for six or seven years.
I know I probably had cysts all my life and just never knew it because of the pill. Once off of the hormones is when I noticed them. I know they cause pain when they start to leak. And I know when they rupture it can be painful too, but I don't think mine ever did that. I know that kind of thing can send you to the ER.
The robotic surgery is said to me more advanced when it comes to lap surgery. It has 3-D imaging and many tools to move things around and take samples and such. My doctor said that he preferred to do this type of surgery rather than your typical 2-4 incision lap. If it is truly better, I have no clue.
I definitely do not want to do the Zoladex or Depo Provera. My aunt hated when she was on those. She said it helped, but she hated it. It seems like Mirena will be the route I go.
I am on some pain meds from the surgery, but for the 3 months that I was having consistent pain, I didn't take anything. I gritted my way through it. I have gastritis and can't take a lot of NSAIDS regularly. They tear my stomach up really bad. I'll only be staying on my pain meds from the hospital until this Saturday and then I'm going it alone again and praying the pain stays away. I am also on stool softener/laxatives on a daily basis to keep my bowels moving. My GI doctor told me to do so for my IBS.
I would consider some kind of pain relief ongoing, doesn't have to be anti- inflammatories. Untreated pain can lead to nerve damage, where your nerve send pain signals whether there's any stimulus or not - that's the boat I ended up in after being untreated for so many years. I've been on opiates every day since I was diagnosed, don't know how I could function without them (it's a struggle even with them).
It's truly a double edged sword with me. I can take Tylenol which isn't a NSIADS, but it has no effect on me. I just don't want to tear my stomach up again with pain meds.
Yes, I can definitely get my medical records from this procedure. I called yesterday to get information on it. All I need to do is pay a fee and sign off on a release paper and all of the records are mine. I can't get in today since they close early and I have an interview to be at, but I am hoping to grab them on Monday.
Thank you for your suggestion and information. It is very much appreciated.
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.
The references to "reactive changes and acute inflammation " indicate that there is something going on even if it isn't endo. Inflammation can definitely cause pain. In your position I would take a copy of the histology report with you and ask the specialist about this specifically.
Adhesions can be caused by many things: infection, inflammation. If they are dense adhesions they tend to come back after surgery which is why surgeons often avoid this.
I have a long history of recto-vaginal endometriosis and adhesions. The adhesions concealed the deep endometriotic disease in the pouch of douglas. Removing this disease saved me from losing a kidney but did not resolve the pain. Pain can have many causes.
I have never had any previous surgeries, no infections in my abdomen, no Pelvic Inflammatory Disease, no STI's, no appendicitis, no anything that would put adhesions in my body. That's why I'm unsatisfied with my doctor's answer of "Well, you don't have endo but it could have been fibroids that gave you adhesions." Fibroids don't cause adhesions and they would have shown up in both of my ultrasounds and during surgery. I'm so lost.
I didn't see any surgical report with my papers. It was just a pathology report. Everything I typed out was everything I had in my records. I feel like there is something missing.
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Endo adhesions healing themselves? 
Break down adhesions? 
Adhesions found but no active endo? 
No "obvious signs of Endometriosis" all the symptoms
Laparoscopy found no Endo?
