What would you do?
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Hey guys.
Finally got into see the second gynaecologist. He was surprised by what I had been told earlier (have babies!) and after chatting with me for a while and doing examinations and looking at ultrasounds, he wants me to have a laparoscopy done. He believes there is a 40% chance it is endometriosis (couldn’t see anything on ultrasound and couldn’t feel anything on examination, but going off symptoms, retroveeted uterus, and something else he thinks it’s a possibility). He thinks it’s important to rule out so we can focus on fixing whatever it might be if not endo.
I’m completely torn. On one hand if this is the case it’ll hopefully improve. On the other if it’s not I will have gone through surgery for nothing (which I’m not too sure my mental state will handle as I’ve just had a procedure done on my heart for a condition I was told I didn’t have, them had, them didn’t have, them definitely had by various doctors and cardiologists over 10 years (turns out I had it all along and it’s fixed now) and went under to have vocal nodules removed last year but then once I was unconscious they found they were healing so they didn’t touch them (I still sound husky 
) but like he says it’s important to rule out so I just don’t know 😭
Here’s what I told the specialist;
Period History:
-Started periods at age 12. Were always painful, but Panadol was generally enough.
-When I turned 14 periods became a lot more painful and a lot heavier. They would often last 6 – 7 days.
-The pain would often make me vomit, sweaty, nauseous, hot, bloated, and I would have bowel symptoms (often struggling to go on day one, but diahorrea day 2).
-I usually get cramps several days beforehand, and several days after I have stopped bleeding.
-The first or second day is always the worst.
-The pain isn’t just in my stomach, but also in my thighs and back as well.
-This would lead to me missing school, sport or work usually at least once a month.
-I saw a doctor at 14 who prescribed the pill. My dad was against it so I didn’t start until I turned 18. I tried Panadol, ponstan, fish oil, and anything that was suggested but would still often end up missing school, sport, and work, and lying in the bathtub all day.
Sexual history:
-Became sexually active at 17.
-I had always had problems inserting anything (fingers, tampons, ect) and sex was no different.
-It has always been uncomfortable, but has gotten more and more painful over the years.
-Whilst we used to be able to try various positions which we enjoyed we are now limited to one that does not cause pain. This is simply one lying on top of the other, chest to chest.
-I have been with the same partner for almost 10 years.
-We have tried extending foreplay, using lubricants to try and reduce the pain but nothing really seems to work.
-When we have intercourse in certain positions, I feel pain predominantly in my left pelvic area as he moves in and out. This often brings tears to my eyes so we tend to avoid experimenting for this reason.
-He is fantastic about all of this, but I know he would love to try new things.
-Most of the time we focus on external stimulation rather than penetration due to this issue.
The pill:
-The pill helped quite a lot. Often I would still need Panadol but was able to continue with work and school.
-My periods were lighter and only went for 5 days instead.
-I had to come off the pill early last year due to other health issues. While this was being investigated my periods really “amped up” leading to me collapsing in the bathroom at work from pain and once again needing to take days off work.
-I also became iron deficient from these heavy periods.
-A doctor ended up prescribing me codeine, and whilst it helped manage the pain, it made me dazed and I often still needed time off. It was around this point I was referred to the first gynaecologist.
Previous Gynaecologist
-I saw a gynaecologist last year. I had two internal ultrasounds completed both of which showed nothing. He said he thinks I am fine, and to stay on the pill, exercise, eat well and drink water. He also suggested that this will resolve when I have children.
-When queried about symptoms, he suggested the bowel issues around that time of the month were mainly the effects of constipation.
-I was refered again to a gynaecologist when I went to my new GP as I was looking for ways that I could reduce the pain experienced during sex. Something I had not previously discussed with other doctors.
The nexaplon rod:
-After returning to my GP after meeting with she questioned my appointment I had had 4-5 months prior as she had not received any communication from him.
-I told her about my experience and she suggested we try something else which led to the nexaplon being put in.
-I have had this in since September and this is the least pain I have ever been in. I have only had 3 periods on it (each one increasing with pain, but only 1/100th the amount I would normally feel) I have no bowel symptoms, no bloating and no nausea with this.
-I also began to experience depression/suicidal thoughts towards the end of last year. I don’t know whether this is related to the rod or not, because I was going through a stressful time as well, but I am now on an antidepressant as well. This is potentially the only side effect I have had.
-My periods tend to last longer on the rod (10 days and counting) but without the pain I don’t really mind.
-I love the rod. I feel like I can handle my periods on it and sometimes I don’t even need Panadol.
-I am seriously concerned with how I will manage the pain when my partner and I decide to have children in a few years and I have to come off hormonal contraceptives.
Long read. I know. But I would very much appreciate some advice and to know what others in similar situations would do/have done?
X
0 likes, 2 replies
ryann33508 Emily2009
Posted
He was surprised to discover I actually had very bad endometriosis. I can’t count the number of bad periods I’ve had on one hand that involved pain and vomiting, although due to having many cysts over the years and my hormones aggravating my Crohn’s, I’ve been on continuous birth control since I was about 22. But in the past year I’ve developed almost constant abdominal pain, and I hadn’t connected painful intercourse. I’ve become tighter and tighter over time, which I mentioned to my gynecologist when I was in my early 20s and was told it was likely just anxiety. I recently changed birth control because I bled for a month despite being on birth control a few months ago, and I’ve started doing that again.
Another option to look into would be natural. I am a huge proponent for a combined approach, because people did survive with health problems before modern medicine, albeit not always well. But if you’re surviving and feel ok, it may be worth it to try some natural approaches. I see a physician who specializes in vitamins and when I had the cyst and was on the meds, it wasn’t growing very much. For a month I went off of the vitamins because I was curious (went off of everything). The cyst grew a centimeter in that month. Needless to say, I went right back on everything. To break up the current scar tissue, myofascial massage may be helpful. Fascia is the same tissue as scar tissue, but it’s useful in the body to hold our organs in place, otherwise they would all just fall down. Due to surgery or conditions such as endometriosis or just weird bodies, some people have too much fascial tissue that can cause problems. I’m seeing my gynecologist soon about mine, but also because my husband and I are ready to start trying for kids and I’ve heard that pregnancy can resolve the problem. My mother actually couldn’t get pregnant for 10 years, but didn’t seek outside fertility treatment. She got pregnant with me and then when I was a year and a half old got pregnant with my brother. She was never diagnosed with endometriosis, but had had a lot of cysts in her 20s like me and then everything resolved after being pregnant with me. I think she had endometriosis.
That being said, don’t get pregnant just to treat it. There are other treatments, both natural and modern.
I hope you figure it out and feel better soon!
aitarg35939 Emily2009
Posted
Emily, one of your docs doesn't know much about endo & gave you some misinformation:
1. Your bowel symptoms can be endo. Wherever those uterine cells grow, they still cycle. When they grow anywhere on the intestine -- as they so often do -- their cycling process causes problems. Diarrhea that comes with the period is quite common, and so is constipation much of the rest of the time. The loose bowels may not always show up, but you can also get stuck with it continually for months on end. Fortunately there are much better anti-diarrhea drugs nowadays so no one should get to 3 months of diarrhea & require hospitalization. This alternating of extremes is why we often have to visit GI docs, to make sure we don't have Crohn's or ulcerative colitis. To often lazy docs just assume that it's all irritable bowel or gluten issues without any investigation or confirmation. You can still have some of these along side endo, obviously.
2. Laparoscopy is the only final determinant of whether you have endo; ultrasound is not.
3. For some very lucky women, full-time pregnancy works. For the rest of us, it doesn't. Right now there isn't a licensed doctor anywhere who can say with certainty that it would work for you, save perhaps online whacking programs.
4. I don't think that anyone can guarantee relief via laparoscopy. Sometimes yes, sometimes no. But you would have the relief of knowing, and that relief can't be discounted. Sometimes it puts our pain & sexual discomfort into a different light because some unconscious portion of us isn't fretting that maybe the pain is cancer or something else possibly terminal.
Even if you don't have endo, the lap wouldn't be wasted because you would've ruled out this one issue.
Hope it all goes well for you.