Is this normal?

[rubywoo1]

I'm 17, originally I was unsure of whether I had endometriosis. Im due a laparoscopy in two weeks (18th of March), and now I'm pretty sure I have endometriosis in my bowel. All my symptoms heavily correlate, but now i'm wondering something. All my symptoms have suddenly and drastically gotten worse within the last few months, I missed a week of school last week due to the pain and im still in a lot of pain now. However, before I started having sex, the only symptoms I had were constipation, diarrhoea, very heavy periods and slight pain. As soon as I began to have sex, I noticed the pain during intercourse and since the pain I feel in my lower left abdomen has only worsened. It gradually worsened over the last year or so, but now these last few months have been terrible, I spent my period last month in the emergency hospital due to the pain, and this month I have been unable to go to school. The pain hasn't been this bad before, so my question is...

Is it normal/common for symptoms of endometriosis to grow/worsen over time, or is it terrible from the start? Thankyou xx

[RJS626]

I'm 21, I started my period late (14), lost my period for a while due to an ED, and then went on the pill after I first had sex (16), and this first time having sex was not deeply painful, only superficially. Periods were painful but completely manageable, and I probably only ever had a handful before going on the pill which somehow stopped me having a period for 4 years. The only time I bled during those 4 years was when I had sex one time two years later (18) which caused deep pain and made me bleed for a few days - I was concerned enough to go to the doctor who dismissed my symptoms as merely my body not being used to sex yet, which seemed fair enough at the time. I then met my current boyfriend a year and a half ago (20) and found our sex was unbearably deeply painful, and then suddenly while still on that pill that had stopped me bleeding for 4 years I bled straight for 5 weeks (last Feb). I was given a different pill (combined) to make sure that pill (PoP) wasn't causing the bleeding, which worked for a while in stopping bleeding altogether. But then at the end of November 2018 I started bleeding constantly for what lasted 11 weeks until my diagnostic laparoscopy (this Feb). All this bleeding was causing severe pain which clearly escalated over time, and the deep pain during sex progressed to the extent that the slightest foreplay would cause contact pain, and the deep pain would result in bleeding during and after even light foreplay. This February I had my diagnostic laparoscopy which, the nurse could only tell me briefly and I am waiting for my diagnosis letter and follow-up appointment to hear what the surgeon officially says, diagnosed endometriosis in the Pouch of Douglas, but I don't know any more than that yet. I have always suffered with diarrhea during periods and always considered myself to have IBS, but as my symptoms were progressing since becoming sexually active I noticed that during really bad pelvic pain flare ups I would find it hard to go to the toilet even when my my bowels were relatively "normal" because it would feel like a sharp tearing/pulling sensation on my womb. Finding endometriosis in the POD definitely clearly explains this battle I'd have of choosing severe womb pain or bowel pain to alleviate the other.

Sorry for the complex (and believe it or not, cut short!) history but I just wanted to show the progression of my symptoms over time and especially since becoming sexually active, and that progression of bowel symptoms also correlated with general pelvic pain progression. For the entire time that I got periods they felt 100% well within the normal range. We all know our bodies, and progression of symptoms seems normal from other women's stories that I have read too. Up until just over 1 year ago I didn't have a period or any pain for 4 years, but it could have started years before had I not been given the kind of contraception I started with or had I become consistently sexually active (intercourse-wise) before that point. You aren't expected to know the answers but the fact that you are awaiting a laparoscopy shows that someone is committed to getting those answers for you. Getting on that waiting list in some ways seemed to be the biggest struggle for me at the time. This is the start of a treatment plan whether they find endometriosis or not and getting that answer by itself provides great relief, let alone what treatment can be provided based on either of those answers - wishing you the best of luck.

[rubywoo1 in reply to RJS626]

Thankyou so much! That has really helped clear some problems in my mind. I read online that people with endometriosis on the bowel often get misdiagnosed with IBS or Crohns disease, unfortunately, my mum suffers from Crohns disease therefore there was a small fear that I could have developed the disease due to the hereditary history (a few people in my family have this disease) however all my symptoms correlate with endometriosis rather than crohns disease, and I am missing a few major symptoms of crohns. I was just worried as I believed that endometriosis began from your very first period, your response has helped me a lot! I'm so sorry for your experience, I hope your symptoms lessen/ you find better pain relief xx thankyou xx

[RJS626 in reply to rubywoo1]

That's okay, I suspect that any abdominal or pelvic conditions are extremely difficult to research. So many people say that looking into symptoms online is a terrible idea but (1) when the symptoms are so severe it is near impossible to avoid it, and (2) I think having looked into endometriosis so much prior to my diagnosis I might be handling it better than I would have otherwise. You are so close to hopefully getting some clarity so that your symptoms can be managed with more precision.

Also, I am at university with my condition having quite a big impact - if you feel that mental health support might be beneficial for you if school and pain is becoming overwhelming, or if you anticipate that it might reach this point during exam season or anything, then don't feel like you need to wait for a diagnosis to be able to seek help with the mental impact your symptoms have on you. That is my only regret - not missing any signs and thinking "I could have been diagnosed sooner" - but feeling that academic allowances and mental wellbeing hinges on a diagnosis xx

[rubywoo1 in reply to RJS626]

Yes it's definitely having a negative effect on school work, being in my final year of A-levels. And although it can be very demeaning, and emotionally draining at times, I refuse to let it overcome me, I still remain to be very lucky with the life that I have, thank you for your response and kind works, at least we're clearly not alone xx

[RJS626 in reply to rubywoo1]

I admire your attitude - take care and best luck xx

[kemonica]

I have endometriosis for 12years now I had 7 surgery there no cure I go to obgyn about this problem I always have pain but if u eat right take care of your body don't let this illness slow u down god has a plan for u keep going in go to in obgyn it was times I went to the hospital everyday for pain on all kinds of things but now I can live with it sometimes I also have Interstitial cystitis it's very painful I have a uro also it's best to go to a special get test done it's no joke

[Evilicious]

Hi yes it is normal for it to get worse over time, I've had the surgery 6 times and I'm waiting on surgery date for this Month also, the pain has been at it's worth and the stabbing comes out of nowhere, I hope you feel better soon after your surgery and have a greater success of it not returning as mine do

[StefaniaJW]

It's not uncommon to get worse after having sexual relationships. If they were unprotected, you could have contracted an infection that could have resulted in PID, which is so hard to treat. I suggest you contact your gyno immediately to have a vaginal swab done.

As you wait for the laparoscopy, I HAVE to ask you if the surgeon that will perform it is an experienced endo surgeon who will only perform EXCISION SURGERY on you.

It is VITAL you only get an experienced excision surgeon to cut you open otherwise the pain might only get worse after the lap. I'm begging you ro research your surgeon right now!

[SMcCabe]

Hi Rubywoo1. I’m 45 years old and struggled for years with endometriosis starting around the age of 18. Yes, all of the above are “normal”/typical of endometriosis. I had a total of 12 abdominal surgeries (laporoscopies and laporotomies) before surrendering to my doctor and having a total hysterectomy. It was so extreme that he could not remove my cervix because it was adhered to my bladder and would be damaging to remove. For years I was miserable! Immediately following surgery I would feel relief for a while but the pain and discomfort would eventually build back up to the extreme again usually causing me to have surgery approximately every 6 months. Following my hysterectomy I later found I had it covering my bowels and bladder as well. I have several other medical conditions so I’m not certain if I have eventually just become accustomed to the pain or if it has eventually just calmed down over the years. However, I’m sure there’s no correlation but I now have Interstitial Cystitis and just not sure which diagnosis causes what pain but sex is definitely not the same as it once was. These days it has become very painful.

I hope that endometriosis does not end up being your diagnosis and that it is something much easier to deal with. Best if luck to you!