desperately need help. pelvic / ovary... - Pelvic Pain Suppo...

Pelvic Pain Support Network

19,324 members5,619 posts

desperately need help. pelvic / ovary pain. twinges, ache, sciatica, back pain, labour pains

xcht profile image
xcht
32 Replies

I had a ruptured cyst 2 years ago during sex. I didn't get an ultrasound scan for a few days later where they saw fluid and diagnosed a ruptured cyst. it was the worst pain ever where I couldn't move or walk, I was sick and boiling hot. since then I have had pain in the exact same place where I felt the pain after sex. I've been in constant pain ever since, it's getting worse where I can't walk a lot. the pain radiates from my pelvis down my left leg, up my back, to my shoulders. I've been prescribed gabapentin and ampitriptiline. I've had numerous ultrasounds, internals which all came back normal apart from normal fibroids and a few cysts but nothing to worry about. Endometriosis was then mentioned. I waited 7 months for a laparascopy which I had 2 days ago. They found nothing. No endo tissue he even went on to say it was all in "pristine" condition. I burst into tears. I don't want there to be anything wrong by any means. But I know there is. I'm 20 years old and it's ruined my life. The pain is always there. My womb feels heavy, it's a dull ache and pain is always worse in the evenings after I've been walking around. Then it feels like labour pain. My stomach is swollen everyday to where I look 6 months pregnant. I have trouble with bowels also - such bad pain when I go and I also get a lot of blood. I've stopped havig sex as it hurts too much. Clothes hurt my skin. I can't wear jeans or tight clothes. Please somebody help me, nobody is listening to me and after this laparascopy I've just been left to try and manage the pain. That would all be okay just as long as I had a reason for it !! I'm absolutely desperate. I pin point my pain to where I think my left ovary would be.

Written by
xcht profile image
xcht
To view profiles and participate in discussions please or .
Read more about...
32 Replies
66crusader profile image
66crusader

How dreadful, I am suffering and I am paying privately to see a Mr Vix Khullar, sore him for the first time last week, he is renowned for thinking outside the box he is in London if you are u.k. Look him up on mumsnet for what ladies have written about him. He immediately picked up something with me that quite frankly was smacking the others in the face, he said it is a case of opening doors to try and find the answers.

xcht profile image
xcht in reply to 66crusader

did he give you any answers for the pain?

66crusader profile image
66crusader

Also you most definately should not be getting blood when you go for a poo. Needs checking a.s.a.p

xcht profile image
xcht in reply to 66crusader

I've told my doctor she seems to think I have endo tissue on the bowel. But now my laparascopy says otherwise.

dingbatqueen profile image
dingbatqueen in reply to xcht

See my recent comments....also, endo can be hard to spot. Even a minute spot of endo can cause SEVERE pain. The amount of pain a person has from endo varies widely and has NOTHING to do with the AMOUNT of endo in your body. Just an FYI - endometriosis are endometrial tissue implants which travel to places that they otherwise should not be. Endo implants can and have been found *anywhere* in a person's body. I've even heard of someone having endo implants behind their eyeballs (ick!!). Some old-school doctors will tell you that implants can't travel outside of the uterus but they're living in the dark ages. AN IMPORTANT NOTE: if you take birth control pills, endometriosis pain will subside, sometimes completely. Are you on the pill?

66crusader profile image
66crusader

He said a lot of pelvic pain starts in the bladder, and that's where he always starts and works from that point like putting a jig saw together. I have e-coli that hadn't been picked up and my bladder is double the thickness it should be, so starting off with that on strong antibs and then he will carry on with the process. The physio I see also had similar problems to me , and here's was started by a UTI, she is under the same consultant she is now 95% better but didn't happen over night, it took two years.

I am not saying in any way that is your problem at all, but you need to find someone who really wants to try and help, however I realise that at your age money will be a possible problem.

sharelle profile image
sharelle

Research the condition pelvic congestive syndrome (or something like that, not sure that's the correct name but you'll find it putting those words in). Anyway I've been having the same problem and all the symptoms I have match it. If it matches yours print off the info and take to your doctoras there is a very specific test for this. I'd like to know what happens and hope you get some relief soon

xcht profile image
xcht in reply to sharelle

I will definitely look into it now, thanks so much for replying I'm just desperate.

xcht profile image
xcht in reply to sharelle

Can i just ask what the test is for this please?

dingbatqueen profile image
dingbatqueen in reply to sharelle

Good suggestion, Sharelle.

PPSN_JudyB profile image
PPSN_JudyBPelvic Pain Support Netwo

As someone below mentioned, pelvic congestion is a possibility but I also wondered about adenomyosis as this can't be seen at laparoscopy: have you had an MRI scan ?

xcht profile image
xcht in reply to PPSN_JudyB

No I've never had an MRI and I've even mentioned it to my doctor if it's worth doing - maybe with all this due to being lower back related ? but she looked at me stupid and said no, there's no need to do an MRI. She has referred me to a bowel person .... but said that's going to take months. I can pin point the pain in my groin, always on one side. it goes from a "toothache" type feeling, to twinges, to shooting pains, to then what can feel like labour pains and I can't walk. the pain goes all up my back and down my one leg - that's the reason my doctor thinks it's nerve related hence the medication I've been subscribed.

Thanks so much for replying and I'm really sorry that I'm babbling on, I'm just hoping somebody will see this and have a lightbulb moment and point me in the right direction. I've been in this pain for 2 years.

dingbatqueen profile image
dingbatqueen in reply to xcht

WOW--2 YEARS....YOU POOR THING!!! You can get lower back pain from so many pelvic problems so I think you should put your lower back on the back burner when it comes to getting tests. You should have a bowel specialist, due to the thickening of the lining. However, the blood in your urine probably wouldn't be bowel-related. It does seem like you have a stubborn infection somewhere. You could also have adhesions that are pulling on or constricting the ureter; adhesions can involve the nerves also, which could explain for the sharp pain which radiates. It may take a while to get this sorted out but I have a feeling that you'll get there. Remember, some doctors are just plain idiots that shouldn't have a license. Sometimes you need to see more than one before you get a bright one. Believe me, I've seen a lot of questionable doctors over my 60-year lifetime....!!!

Maryjayne66 profile image
Maryjayne66 in reply to xcht

Sounds similar to my pelvic abcesses symptoms, a MRI would rule it out..

I would say Adenomyosis has to be a possible culprit.

With cysts, there are many types including chocolate cysts, dermoid cysts and simple cysts.

Any of these can rupture especially chocolate and simple cysts.

xcht profile image
xcht in reply to

Its so hard to tell what cyst it was. As I wasn't scanned for a couple of days later. I'm even wondering myself if it was a cyst!! Although there was fluid there on the ultrasound.

how do you diagnose adenomyosis? I've never really had any trouble apart from painfull and heavy periods. that was until I had this excruciating pain during sex.

Thanks for replying, any information is useful as no doctor is listening to me. I'm sure they all think I'm nuts. But this pain is so real.

dingbatqueen profile image
dingbatqueen in reply to xcht

Pain during sex is another symptom of endometriosis. Sorry, don't mean to sound like a broken record, but your symptoms remind me so much of what I had. The same bloated belly and pain, heavy period, so more more - ugh - I hate to even think about it. I wish you the very best and a quick recovery!

My adenomyosis was diagnosed by MRI scan. Sometimes an ultrasound scan can detect a larger or bulky uterus, and this can be suggestive of adenomyosis.

Here is a link to a very good website

m.adenomyosisadviceassociat...

Best wishes,

Barbara x

sharelle profile image
sharelle

Hi I've just realised I have replied to both your threads, saying the same thing lol! The test is "venogram, CT scan, or an MRI. Ultrasound is the diagnostic tool most commonly used." I got that from Wikipedia when I typed in pelvic congestive syndrome. Look it up x

kiwi1 profile image
kiwi1

I agree with the Pelvic congestion suggestion - I am going through almost exactly the same thing, nothing found in lap, same pains, been through gastro DR and nothing. I will be pursuing this now.

Rhiann profile image
Rhiann

I've just found your original post after commenting to you on another post. Reading this I have EXACTLY the same problems. I'm supposed to be having a laparoscopy, but now I'm not convinced that they will find anything. What are your periods like? Do you have any abnormal bleeding? I just find it really weird that our symptoms are the same and we are the same age.

xcht profile image
xcht

Hey i can't remember whether or not i replied to this. I do have heavy and painful periods. and whenever i have one it makes this groin pain i have a lot worse :/

Andrealee profile image
Andrealee

Hey how is everything going? I am experiencing similar symptoms to you and was wondering if you ever received a diagnosis? Thanks

michad profile image
michad

I have had similar problems and after scans, gynos and then a physio I was told it was probably due to Sciatica problems getting worse at period and ovulation times due to hormones causing your ligaments to soften. My main problem is my sacroiliac joint on my right side. I still have doubt sometimes they missed something more serious but for now I'm building my core strength and flexibility. I'm not as young as you but only 28 although I have 2 children who could have helped cause my problems. Maybe go to to see a good physio?

dingbatqueen profile image
dingbatqueen

You still could have endometriosis even though your gyn says that it's "pristine" in there. Endo can cause adhesions which cause pain also, and each month the adhesions can multiply. They can pull and tear, causing all kinds of different pain. I'm suggesting this because your symptoms sound like mine were before menopause. I suffered for most of my adult life, and eventually I could work only 5-6 days a month. Other days I was in severe pain -- just like being in labor -- along with fever, vomiting, etc. It stole 7 years of my ability to work. If these pains are coming from endo, the symptoms will go away when you decide to have a baby but they could return afterwards. When/if you decide to stop having children, opt for a hysterectomy if you're still suffering from symptoms. OK - endometriosis aside, have they mentioned Pelvic Inflammatory Disease? I'm so sorry to hear of your pain and would recommend a second opinion from another gyn because the meds you're taking are for nerve pain and they obviously are NOT working. I wish I could <<<HUG>>> you....

dingbatqueen profile image
dingbatqueen

I want to add that blood in your urine seems to indicate an infection somewhere - either find another gyn ASAP or go to the ER - don't wait too long!!!!!!!!

howin674 profile image
howin674

I can relate to what you say. I,m going through all of this for 2years and 3 surgeryso. Like you I can't wear clothes like most people, it hurt so bad. I wear a cotton gown all the time. The doctors keep telling me they don't know what is wrong, my life I feel is just slipping me by. I hate to say this but my personal life is gone. I need help so bad,I hope you get the help you need. If you don't mind if will be praying for you.

Mila31 profile image
Mila31

Hi I have had the same pain and eventually the doctors looked in my bladder. Could be interstitial cystititis

kalecolbe12 profile image
kalecolbe12

It seems like you may have pelvic floor dysfunction and the sooner you can get referred to a pelvic floor physical therapist the Better...they are experts in all of these symptoms

Bermuda72 profile image
Bermuda72

This sounds like me same pain every thing u said from walking to bending to constipation smh it hurts all day a dull aching pain i was diagnosed with 3 small fibroids & 1 small cyst on right ovary had a boispy it came back normal

Hi there I feel really bad for you , I think it’s the prob the fibroids causing the pain they cause pressure and make your stomach swell . Not sure about the bowel thing . You shouldn’t be left in that state !! Keep on at the doctors , don’t give up ever , you deserve to be free from the misery of pain take care x

MalachiteAli profile image
MalachiteAli

Blood in urine will either be infection that can lead to sepsis and needs immediate investigation or it could be endometriosis as endometrial tissue can appear anywhere and cause bleeding and pain. You need to see a specialist gynae who understands endometriosis. The NHS has these now but they are oversubscribed and many women pay to go private to see a specialist. Though if you are pain and feel you are being treated badly by the NHS you can complain, which is what I did and I saw the specialist yesterday who is sending me for an MRI. Lap may help doctors see endo but endo can hide and MRI will help will seeing hidden endo for example in bladder/rectum or wall of uterus which is called adenomyosis. Look up endometriosis UK and read about symptoms on there. So many women are dismissed by doctors with pelvic pain it's terrible. I'm sorry you are going through this.

You may also like...

Pelvic pain, need help and encouragement!

Now i have pain in buttocks, legs, back, pubic bone, pain in anus and vaginal pain. Before al this...

Pelvic and lower back pain can anyone help?

actupuncture, had laparoscopy, internal and eternal ultrasound scans, bloods etc and nothing has...

Left pelvic pain help

I'm a 22 and have been suffering from Lower left pelvic pain since about April. I have has a lot of...

24/7 Pelvic pain - feels like I'm in labour but tests show nothing!!!

past month I've had increasing pelvic discomfort and pain. Cervix and rectum were very painful...

Ongoing lower pain- any advice as desperate for help

what the severe pain I get over my groin area is? Its also outside my vagina and the pain is like a...