Endometriosis? Worried I may have it. Help?

posted 2 years ago in Babies
Post # 2
Member
83 posts
Worker bee
  • Wedding: February 2021

This sounds like something I experience – but I have PCOS with pelvic congestion syndrome. I’m going to be blunt about it – theres no point stressing over something that doesn’t need to be stressed about yet. 

My disease is very severe, but my specialists are postive that with the technological advancements, having a child is possible, and will be possible, it just might be a bit harder.

My advice to you – go to the doctors, have the scans, have bloods done – and then re-approach it in a calm manner. It will be fine!! 

Post # 3
Member
1383 posts
Bumble bee

If you cannot get an appt with your gyno pronto then I would get one with your GP. This could be a number of things and it’s best you get checked just to be sure.

Post # 4
Member
715 posts
Busy bee
  • Wedding: September 2018

I have been diagnosed with endometriosis. While every woman’s experiences are different, the big thing that sticks out for me is you don’t suggest the pain is cyclical, which is one of the main identifiers. The pain I have from endometriosis is overwhelming. I can’t walk about, I can’t sit up, painkillers do nothing for it (my most successful painkiller basically just makes me not care about it). I go from daily ibuprofen to keep myself in check to hourly serious prescription painkillers. Whist there is definitely something wrong, if be surprised if you do have endometriosis. It sounds more like a cyst (which I had when I was a teenager) or maybe something like pelvic inflammatory disease. Please do get yourself checked out asap.

Easier said than done, but try not to stress. If your doctor doesn’t take your concerns seriously, find one that will. I am still amazed that “women’s health” is a niche medical field. My male gp had been brilliant, the female doctor who checked over my ultrasound was so dismissive (it can’t be picked up on an ultrasound, and she basically implied I was making it up because that treat showed nothing). You know your body better than any healthcare professional, you’re going to need to be your biggest advocate at times.

Since I was diagnosed, if someone asks about my reproductive plans, I basically respond with “kids aren’t promised to anyone”, which had worked well at changing the topic of conversation. I’m not going to lie, anything that affects fertility is a huge worry if you want to have kids. But at 29, you’ve still got time on your side, and medical options. It helps me (almost 31) to think that if the time comes and we don’t get a baby from the stork by magic, we can use medical intervention to arrange for his arrival.

Best of luck, bee. Keep us informed. If you want to DM me in happy to chat about it.

Post # 5
Member
1560 posts
Bumble bee

I have endometriosis and this doesn’t sound like it to me. It sounds like it may be muscular as it’s not associated with your cycle as a PP mentioned. You don’t mention any other symptoms and usually people with endometriosis have a variety of symptoms such as very painful periods, pain during sex, heavy periods, pain when going on the toilet etc. that have been progressively getting worse over years. I had symptoms since I was 14 and only got diagnosed when I was 25, my neighbour had symptoms since she first started her periods and only got diagnosed in her 20s and she has severe endo. You’ve only had this pain for a few months so I would not jump straight to endometriosis. 

Post # 6
Member
778 posts
Busy bee
  • Wedding: February 2015

I was diagnosed when I was 27. I was worried about children too, but it turns out for me, I was worried for nothing. I got pregnant at 30 and have a 2 year old toddler running around here. And again at 32 and I’m breastfeeding my 3 old month baby right now. Both spontanious and within 6 moths of TTC.

Post # 7
Member
850 posts
Busy bee

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cbryns :  I have endo and I’m fine, quite honestly (but I only have one ovarian cyst). I sometimes have to take an advil on the first day of my period because the pain can be intense (I almost passed out one time–but it varies month by month). I’m fine after the advil. 

My gyno keeps tabs on it. She’s checked to ensure that the ovary with the cyst is releasing eggs, and it is. She’s not worried about fertility, but told me not to wait until 38 to try, in case it’s more complicated. My good friend also has it (worse than I do) and had two babies without any issues. 

Endo is different for every woman and it’s not well-researched. Don’t go into a panic attack yet, haha 🙂 

Post # 8
Member
2245 posts
Buzzing bee
  • Wedding: August 2017

View original reply
cbryns :  I’ve had ovarian cysts in the past and what you’re describing sort of sounds like that. Like others have said, don’t stress out until after you see the doctor and they run tests, it may be nothing serious at all.

Post # 9
Member
226 posts
Helper bee

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cbryns :  that sounds more like a cyst. I have both. Endo is all encompassing. Someone else said it’s cyclical and while mine gets worse at ovulation and for 2 weeks around my period, I have been in pain for entire months. Cysts aren’t fun either but I’m biased when I say nothing compares to the unending incurable pain of endo.

Post # 10
Member
1161 posts
Bumble bee
  • Wedding: March 2017

I agree with previous posters that what you’ve described doesn’t sound like endo to.me. I had a laparoscopy when I was 22 to try to figure out of I had endo because of severe bleeding (since I was 17), pain to the point of vomiting and other Too Much Information symptoms. I had.minor occurrences of endo, but the Dr said not enough to explain my symptoms.

Since then I’ve had multiple ovarian cysts that have landed me in the ER, and many that did not, but were still uncomfortable. What you describe sounds like a minor cyst, IMO.

I’m currently pregnant with child #2, so try not to freak out until you know more. 

Post # 11
Member
45 posts
Newbee

I was just diagnosed with stage 2 endo after having laproscopic surgery to diagnose and excise it; I’m 29. I like you, thought there was no way I could have it: my cycles were normal, on time and not overly heavy, and my pain was constant. I didn’t just hurt around my cycle, I hurt every day with terrible stabbing pains for months. Intercourse hurt, going to the bathroom hurt, existing hurt. 

I had been diagnosed with persistant complex cysts, so that’s all I thought it was, it was my doctor who was convinced I had endo and convinced me to get surgery. I had a fair amount of it, all over my pelvic area with an adhesion on the front of my vagina (source of intercourse pain) and she had to cut a lot out of my bladder as well. I also had a cyst on my actual fallopian tube which explained the terrible left sided pelvic pain.

I agree it sounds more like a cyst, but that’s all I thought I had too, and if it wasn’t for my doctor I doubt I’d have been diagnosed so soon, so definitely see a doctor and push for an ultrasound. As far as fertility with endo goes, I’m terrified too. I don’t have children yet, don’t know if I’ll be able to, and my doctor advises that I start trying soon.

Good luck with everything!

Post # 12
Member
2060 posts
Buzzing bee
  • Wedding: May 2017

I haven’t had it but my mom did and her pain was basically debilitating. She couldn’t walk and couldn’t go to work until she had surgery. She got it after 4 kids though so I can’t help there. Nevertheless she had to have a hysterectomy in her 30s which isn’t good. But she also had cervical cancer when she was pregnant with my brother so her lady problems have not been easy. Good luck bee. I hope it’s something minor.

ETA: My nom also bled like no tomorrow. She would go through super tampons and the large overnight pads in an hour. She stopped wearing tampons and only pads but bled through constantly. She had the worst of the worst which is why her Dr made the decision he did. 

Post # 13
Member
298 posts
Helper bee
  • Wedding: October 2017

It may be endo.  Pain levels can vary significantly with each woman.  Some people have stage 1 and are in immense pain, and others have stage 4, and have no pain.

Either way, I’d suggest getting an ultrasound, that way you’ll at least know if you’ve got cysts.  I’ve got stage 4, and have had 2 laps, and will be starting IVF this summer.  Endo can make it much harder to conceive, but age also plays a factor.  I’m 37, so my advice would be to not wait as long as I did to have kids.  If I had tried to have kids earlier in life, I probably would have been able to conceive naturally, as my endo has gotten progressively worse these past few years.

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