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possible endometriosis

Oct 20, 2015 5:13 PM

Hi I'm new to this site. My name is shelly I'm 23 I have chronic pain and fatigue. My pain is in my lower back pelvis hips and legs. It never stops it's like having a severe period all the time and no pain killers are working. My doc sent me to a gynaecologist saying it could be endometriosis and adhesions? I was just looking for a bit of insight cause it'sa tough situation so i appreciate any feedback cause this pain is excruciating.

Oct 20, 2015 5:40 PM

Welcome Shelly, I can completely understand where you are coming from. I have been tentatively diagnosed with endo as well, but a clear diagnosis is not made until a laparoscopy is done. Have been on Provera 10 mg since September 18th with no change in pain levels. Having my first lap done next Tuesday. Mine is also in my pelvis on the left side(mostly), lower back(at times, hips and upper thighs. I almost describe it as though you are sitting on a tack ALL the time, or that someone has shoved a piece of hot coal in your pelvis. Please feel free to vent or ask questions. That is what we are here for.

Oct 21, 2015 12:28 AM

Amanda what you have discribed , is exacty whaHat a tarlove feels. Also if the y are in th s region of the spine a lot of symptoms mimic gyn problem.

Oct 21, 2015 1:35 AM

Zeta, thanks for the advice but on the last CT scan in February and MRI I had done in May, there was no evidence of any kind of cyst or lesion in my spine, but I'll keep that in mind.

Oct 21, 2015 4:27 AM

Thanks Amanda I'm having a hysteroscopy with dnc on 10th of November and a ct scan 14th of December and after that my surgeon said he'll discuss a laparoscopy

Oct 21, 2015 10:39 AM

Shelly, I know the wait can be frustrating. Been 10 months waiting for someone to get off their butts to help. Keep your head up.

Oct 21, 2015 10:49 AM

I feel like I'm going through the same thing. I have a lot of pain in my lower back and hips. I had a hystectomy almost 3 years ago but have heard the endo can come back and attach to my bowels.

Oct 21, 2015 12:51 PM

Thanks Amanda I wouldn't mind if the pain would give me a break for one day so I could do stuff my fiance takes care of everything bless him it's tough on him but he says he doesn't mind once I'm ok

Oct 21, 2015 6:55 PM

Jessica, yes it can unfortunately if they didn't remove it all during your hysterectomy. Might want to check with your gyn on that one just to be safe.

Oct 21, 2015 6:57 PM

Shelly, I totally understand. It is so frustrating for me not to be able to function without laying down at least 2 times a day. There are some days that I am completely unable to function(like today). Too much pain and nothing touches it.

Oct 21, 2015 9:29 PM

Amanda, sorry I haven't been here, but just for your information, most doctors and radiology groups think these cysts are asymptomatic and totally ignore them. So if you did not see the mri and it did not take a view of the tail bone area then they won't know. Most docs will miss dx the issue for years.

Oct 22, 2015 4:26 AM

I was the same yesterday with the pain Amanda it was so bad I could barely walk at all

Oct 22, 2015 8:17 AM

Shelly, I would kill for even 30-45 minutes of complete relief.

Oct 22, 2015 9:57 AM

I know it's agonising like. Do any painkillers work for you?

Oct 22, 2015 10:05 AM

I've had endo for 20 yrs. Finally getting diagnosed after an emergency appendectomy. The surgeon said "do you know you are covered with endometriosis inside" I was relieved to find the cause of all the agony. Your symptoms sound familiar. The only way to check is to go in with a lap. I've had 6. And don't ever let anyone tell you a hysterectomy will cure it. I still have it growing all over organs and alot of adhesions and now I can't have any more children becuz my doc told me a hysterectomy was only option. Hoping you feel relief soon.♡

Oct 22, 2015 10:11 AM

Thanks for your reply glitter I'm sorry to hear that you can't have any more kid's I'm waiting for scans etc but in the meantime my pain is becoming unbearable. I've already got my appendix out when twelve as I had bowel cancer and had surgeries so they can't say it's that. My surgeon said a lap may be risky over already having major keyhole surgery so hopefully something will work out soon.

Oct 22, 2015 10:18 AM

Oh dear you have already been through so much. I'm so sorry. Will they give you pain meds ?

Oct 22, 2015 10:20 AM

My doc said she can't give me anything until I get diagnosed so I take ibuprofen 400mg three times daily

Oct 22, 2015 10:45 AM

Shelly, nothing cuts it for me except for Advil and of course, can't have Advil right now. So, I too am stuck. Have you tried a heating pad?

Oct 22, 2015 10:47 AM

Ya they are useless to me doesn't help iv tried sprays too

Oct 22, 2015 1:43 PM

And yes Shelly, they won't give me anything until diagnosed either which won't happen until Tuesday.

Oct 22, 2015 1:45 PM

I hope that they give you the proper meds for your pain do you have to get a laparoscopy done?

Oct 22, 2015 2:29 PM

I wish you all the luck in the world and I hope you have a healthy recovery

Oct 22, 2015 5:46 PM

Shelly, I must say, this has been the most frustrating 10-11 months ever. Have been to 2 regular surgeons, 2-3 PCPs, 2 different gyns in the same office, etc. With my last PCP visit, she kind of told me it was all in my head, take 2 Advil before your cycle starts and deal with it. The other PCP in the same office said just recently when I had my pre-op visit, "Yep, that sounds like endo alright." Go figure.

Oct 23, 2015 2:59 AM

It'saamazing how ignorant they can be isn't it? They don't care once it's not them going through it. My doc was the same since I was 12 her answer was the pill and paracetamol. For god sake it wouldn't kill a pain in your toe! And here I am 11 years later with 10 times more pain? They really would make you feel like your going crazy.

Oct 23, 2015 3:49 AM

Thanks Glitter. I justposted my info about my gyne appt later today. Under something about waiting for doctor comment. This is my second opinion. I am with you. I am 47 and I would like to keep my lady parts as long as I can. I needed to have gallbladder surgery. The surgeon said this may not take away all your pain. He was correct. That was three years ago now there might be a possibility of IBS. I'll take one thing at a time.
I was wanting kids. I have been pregnant six times. Out of that I got one daughter who is now 16. I feel it is what it is for me. I know that I am very fortunate to be a mom of at least one child, to be Lauren's Mum. She has taught me so much about life from the enjoyment and individuality of who she is, seeing things in a different way and over coming and working out her challenges and mine. I love her.

Oct 23, 2015 3:58 AM

I need to learn more about endometriosis. My concern also is that is may have already spread. So how would it help to have a total hysterectomy like the first gynaecologist was wanting to do? I need to know more.

Oct 23, 2015 12:06 PM

Today has sucked so much haven't been able to function with the pain! I'm on such a downer I'm sick of this pain

Oct 24, 2015 6:21 AM

Hi I was in the same sort off pain all down in pelvic area and down both my legs to my knees it was excruciating and I would be in emergency every second week and the doctors thought I was a nut so!! Until they finally did a laparoscopy and found I had endometriosis!! They told me I wouldn't be able to have kids and I had only jst gotten married and worked in childcare so was devastated as I wanted nothing more than to be a mum. Anyway after approx 6 months I fell pregnant and after having my 2 kids I have not had endometriosis since they say pregnancy helps because your not getting your period for 9 months?? I really feel for u the pain is awful! Hugs for u 💜

Oct 24, 2015 12:16 PM

Thanks vicstar that's brilliant that you had 2 kid's. Iv had 3 miscarriages and I hope that in years to come I will be able to have kids but I'd rather not risk my health at the moment as iv other problems with my bowel etc so kid's are the last thing on my mind at the moment. I'm in the process of being tested for endo and I am fearing that I may have it as my doc thinks it'sa sstrong possibility as my aunt has it and because of all the bleeding and the agonising pain I'm in when I don't have my period so i just have to wait and see.

Oct 24, 2015 1:23 PM

Shelly, usually endo is genetic and it typically comes from your dad's side of the family. My grandmom(never diagnosed but suspected), my aunt and my cousin all have it. Oddly enough, I believe I'm the only one of my sisters that has it.

Oct 24, 2015 1:24 PM

My aunt on my dad side hasIit since 14 does that make the chances higher Amanda?

Oct 24, 2015 1:27 PM

Ok thank you for telling me i wouldn't of known should i say it to the doc and surgeon or won'tIit make a difference

Oct 24, 2015 1:42 PM

I would just let them know. It couldn't hurt to just say something to that affect.

Oct 24, 2015 1:42 PM

Ok thank you for letting me know

Oct 24, 2015 11:11 PM

That's interesting. I inherited it from my mom, not anyone from my dads side.

Oct 25, 2015 3:45 AM

Ya my mom'sside ddon't have it only my dad'. My mmom's side is more cervical cancer

Oct 25, 2015 5:58 AM

Same thing for me. Moms side doesn't have anything. Only dad's side does.

Oct 25, 2015 6:53 AM

Amanda, that is a very interesting tidbit of information!!! I had no idea that endo would be passed on through the father.. Hmmm, seems you've been teaching me a lot these days. I appreciate it. I love to learn new stuff. Most folks think that there is never anything left to learn but that's not true. Hope everyone had a restful night and will have a peaceful and less painful Sunday!! 💕🙏🏻🌻

Oct 25, 2015 7:07 AM

Alwayz, I only learned that by talking to my cousin who also has it(lucky us).

Oct 25, 2015 8:48 PM

That is very interesting and odd. Both my sisters and I have it, and a cousin on my mom's side. But my dad and I share a lot of medical problems. I learn something from someone almost every day here. 🙏🌼

Oct 29, 2015 12:56 PM

My hysteroscopy was cancelled cause theatre is closed more time with heavy bleeding and pain

Oct 29, 2015 1:18 PM

So sorry Shelly. That stinks. I also did not get a definitive diagnosis, because there was no visual evidence of it. But he did say that just because it's not visible doesn't mean it's not there. I honestly feel like death warmed over today. Going to try to get out and try to walk this gas out already. Miserable does not even begin to describe it.

Oct 29, 2015 1:28 PM

I'm sorry to hear your not well make sure to keep warm and get rest i will be seeing my surgeon the 5th of November so I'm going to ask him when the laparoscopy going to be done.

Oct 29, 2015 1:49 PM

Sorry Shelly, not trying to take over your thread, but have a question. If anyone here can answer, that would be great. This might be tmi but just curious. When he did my lap on Tuesday, I knew they were going to do an exam under anesthesia, but I'm curious to know if I should be expecting another exam on the 14th which is my post-op appointment day. Trying not to get myself too anxious about it because that will just make me hurt worse, but am wanting to know so I'm not surprised that morning.

Oct 29, 2015 1:52 PM

I think they might not because they have already done one?but they might have to just to be safe

Oct 29, 2015 2:14 PM

I was afraid you would say that already. Damn. I don't tolerate them on good days, let alone on really bad days. Hell, I was half tempted to ask him to do the whole bit while I was out, but didn't work up the nerve for it.

Oct 29, 2015 2:19 PM

They might not if they already did one. If you can't tolerate it they should understand the and put u out for it so you don't have to stress. It's your body and you need to choose what's right ffor you and keep your stress levels low cause that can make the pain worse for u

Oct 29, 2015 2:19 PM

Amanda, when you go for a walk and get that gas out, you'll start the deflation process.. LOL!! No but really, as you release the gas you will not be as distended and will have less pressure and pain. Sending {{{Hugs}}} to get you through the day.💕🙏🏻🌻

Oct 29, 2015 2:43 PM

Oh the deflation process has finally begun. Less pain, definetly less pressure. Belly still swollen up but not as bad. Shelly, I think the worst of it is over. Hopefully I'll be able to tolerate it awake. My gyn is awesome!!!!! And he also try's distraction by talking about life above the sheet if you get my point.

Oct 29, 2015 2:46 PM

That's great that he chats to you mine just dives in she is rough and i do be very sore and bleeding. How did you feel after your lap if you don't mind me asking?

Oct 29, 2015 2:53 PM

Reasonably good at this point. Still really nauseous but we think that it might be from anesthesia, sore and bruised but otherwise good enough. Had to have a script called in early this morning for nausea but thankfully, one of the other docs who was in the or with me was on call so she understood. There were 2 things that were quite nice. Our local hospital plays Brahms lullaby overhead whenever a baby is born, so right as I went into surgery, that came one and one of the nurses was holding my hand as I was being knocked out.

Oct 29, 2015 2:55 PM

That's great and that's a nice touch when the baby's are born over hear there just born and that's it.

Oct 29, 2015 3:00 PM

Yep, and I did not feel scared going in. Once I actually saw my surgeon, I was perfectly fine. Felt his hand on my shoulder, that was all I needed.

Oct 29, 2015 3:02 PM

That's brilliant that you were calm and everything! Where are you from if you don't mind me asking? I'm from Cork cityIin Ireland

Oct 29, 2015 10:23 PM

I have endometriosis and was diagnosed with it seven years ago. Yes those are the symptoms. My cramps and periods would be super bad and I would have these pains while I was on my period that would go down into my thighs. I had a laparoscopic surgery where they went in and they looked at my uterus and I had adhesions and those are what's painful did he shins can attach themselves to your bowels and your bladder and they can cause problems. When they go in there and look they can burn the lesions off. You can also be placed on a shot called Lupron where you get one shot a month for 6 months and this puts you into menopause so that you quit making estrogen and the endometriosis stops growing. Or you can get put on birth control and this will help with a lot of the pain. I am only 29 so they will not do a hysterectomy on me and I do not want anymore children so I currently have a Mirena put in until I am old enough to have my hysterectomy done.

Oct 31, 2015 7:31 AM

Jen, At this point I'm going to ask at my post-op appointment if we can switch things up to Mirena. This taking a pill everyday is for the birds. I also don't know if it was just adhesions causing the issue or what, but no significant pain since. Just tired and exhausted still.

Oct 31, 2015 6:43 PM

I'll be 54 next week. But I had a hysterectomy @ 33 & oophorectomy @ 41. I had endometreosis at both times. Six years ago they had to go back in to remove aa 10 cm paraovarian cyst. Again they found endometreosis. I've been in menopause since 1995. Menopause has not helped keep me from having endometreosis at all. I sure hope the Lipton works better than real menopause, for y'all's same! 🙏🌼

Nov 06, 2015 7:55 AM

Finally got a painkiller from my surgeon that seems to be working so far

Nov 09, 2015 1:27 PM

Painkillers are working but have constant pelvic and lower back pain even with the pain killers but my biggest worry is all the bleeding my doc has stopped my pill due to migraine and the fact it didn't stop the bleeding and the pain that is there. Now I'm stuck on primolut 5mg to stop the bleeding but the last time they done this I still bled bad and I suffered with fluid retention and ended up gaining two stone. Iv worked really hard to lose a stone in weight and I don't want to put on more weight and I don't know how much more I can take with all the bleeding

Nov 09, 2015 9:14 PM

Shelly15, I wish I knew of something to suggest to help learn the bleeding and pain. I add there before they took my uterus, dysmenorhagia, endometreosis, & scar tissue. You're in my prayers! 🙏🌼

Nov 14, 2015 7:42 PM

I have terrible pain with my periods and they can be really bad. Im on ortho tri cyclen lo so they are 4 days instead of a week thank goodness. My periods are still bad but less days help me deal with it. Doctor thinks it could be endo bc im not responding to birth control like I should, but no one wants to persue this idea. Im just coping with it. I also have cysts on right ovary. Those hurt and I deal with them because nothing helps me pain wise. Hang in there I understand your pain.

Nov 14, 2015 8:00 PM

Wolf, I'm beginning to suspect that myself with me, even though he didn't find any evidence. Oral Provera is not working. Can't take Estrogen cause I'm over 35 and a smoker. Not at the point yet for hysterectomy. There is another option that I was looking at and that would be NovaSure. It's meant to burn off the lining of the uterus so no cycles. Won't know exactly if we can try this until Friday. At this point for me, anything goes.

Nov 14, 2015 8:09 PM

I have migraines no aura and im only 20 so its hard for the doctors to do much for me. My name is Heather. :) It sucks but im doing my best to deal with this.

Nov 14, 2015 8:41 PM

Shelly I have had the pains u r describing. I had a hystetocopy and dnc and then had a myomectomy . I have upwards of 25 tumors in and around my utetus and in my abdomen. The surgeon was only able to safty remove 8 of them so she left the rest anbd now I'm on hormone therapy to stop them from growing. I don't mean to scare you but this was my case in addition i have fibro and possible lupus. I hope you find out what is wrong very soon. I'm praying you have avfast recovery and positive results and simple answers. And welcome to the group this is a great place.

Nov 15, 2015 6:25 AM

Thanks fibrogirl my surgeon already suspects a growth in my stomach so I'm waiting on a ct scan then he said he'll discuss a laporoscopy and I'm also waiting on dnc hysteroscopy too so hopefully something will show and it can be sorted

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