1st lap and no endometriosis found, completely hopeless and depressed. Any advice appreciated

[hollyadele]

Hey I'm looking for some advice if anyone can offer any or just some support as I've losing the will to carry on.

I underwent my 1st laparoscopy yesterday after the drs suspected endometriosis. No endo found and no follow up plan given. They only looked at the outside of my uterus, ovaries and fallopian tubes. I am a newly qualified nurse and have lost my first ever nursing post because of time off work from pain.

My symptoms are as follows mainly during ovulation and more intense in the lead up to, and during my period:

Back pain, mainly lower (leading quite regularly to sciatica)

Pelvic pain (like my bones are rubbing together)

Abdominal pain that feels like burning

Pain in my right lung feels like my lungs won't expand properly (Dr said my chest and lungs sound fine)

Joint pain

Pain in my shins

Nausea

Bubbling feeling in my stomach

Excruciating pain after any internal examination

Pain after sex (not always and not as bad as after internal exams)

Pain and tenderness to touch around the right side of my rib cage

I feel like I'm going crazy and have never felt this depressed in my life. I saw a doctor today who grinned when I told him I felt like my right lung wasn't working properly and said he feels that a physical problem won't be found and its likely a psychological issue. These symptoms have slowly increased since having the implanon removed just over a year ago.

Has anyone been in a similar position to me? I'm sick of crying, am jobless and considering calling off my wedding as I have no income and dread the thought of having to go through my wedding in agony. Thanks in advance for any advice given

[Maidenellie]

I am currently awaiting my first lapo, I suffer with every single one of those symptoms and I will also feel helpless if they find nothing.

Though to me it sounds as if they didn't have a good hunt around, as endo can appear and affect some of the other organs.

Are you on any contraception?

Xx

[hollyadele in reply to Maidenellie]

Hey there,

Thanks for your reply, sorry to hear you're experiencing this pain too, I hope you get an answer soon and can get your symptoms under control

Contraception isn't an option for me and me and my partner would like to start a family after 8 years together. we did start trying but lost hope and decided to let nature do her job, so far, no luck in baby making.

Xx

[Maidenellie in reply to hollyadele]

Thank you and I hope you find answers too!

The reason I asked is because I'm on the implant therefore worried that they won't find anything in my lapo as I don't have proper periods. (When I did they were pure hell on earth!) and I wondered if that's what happened to you.

I think you should push for answers. There's clearly something causing the symptoms.

Me and my partner are on our 7th year, so we'll be looking to start within the next few years. Best of luck starting your family hun. Xxx

[hollyadele in reply to Maidenellie]

I was the same before the implant and during, I had the most horrific periods, really long and heavy with lots of pain still, but since having the implant removed they have become shorter and shorter, lasting on average around 1 1/2 days each months, the pain is just increasing all the time though.

I'm not sure if it makes a difference whether you're on the implant or not but hopefully they'll find what's causing you all this pain

Good luck with starting a family soon too, wishing you lots of success let me know how the lap goes and if they find anything. I'm going to move doctors and see if I can get referred to a specialist as I've found a few on the nhs that might help xx

[Cook1977]

Sorry your having such bad time, I too have postponed my wedding, as pain and not knowing what causing it is too much to bear.

I think you should get a second opinion, im new too this forum, and im due to get my first laproscopy in 2 weeks time, but what Ive gathered is a lot of surgeons arnt really qualified for finding endo, and it can be missed, I would try get a second opinion with a qualified gynecologist that has a keen interested in Endo.

I have just paid to see a private gynacologist consultant who is qualified in endo, sometimes its worth paying to see a private consultant and then getting your treatment on the NHS, it doesn't work out too expensive then xx

[hollyadele in reply to Cook1977]

Hey I'm so sorry to hear you've cancelled your wedding, we're considering it but I'm so upset about it, feels like my life is just spinning out of control

How did you go about seeing a private consultant? Sounds like a good idea as I feel I've just been fobbed off after a pretty poor lap by a non-specialist xx

[JeanOsborne in reply to hollyadele]

Hi have you looked on the BSGE website. It shows a list of specialised endo centre which are nhs?

[Cook1977 in reply to hollyadele]

Hi Holly, you can either go to your doctors and ask for a private referral, or If you phone up bupa like I did, you might not need the referral if you have all your medical notes. xx

[Elwood]

Hiya

Please don't get too down, not finding endo is a really good thing, having endo is a living nightmare which I wouldn't wish on anyone.

However I understand your frustration on not having answers. I am not a medical professional but the pain in your chest and the bubbling sensation may be caused by a gastric/intestinal issue, people play down the impact of things like IBS or IBD but they can be excruciatingly painful, debilitating and have a impact on your periods, I would suggest if nothing was found in your lap you demand further exploration into the source of your pain and a referral to a different department to take a look elsewhere in your abdomen.

Good luck and try to stay positive, not finding endo might mean you have something that is fully treatable rather than a recurring chronic condition.

Chin up xx

[nicolajones63]

I'm sorry you are going through all this and have no answers. I have all the same symptoms as you and have just had lap to remove extensive endo from pouch of Douglas, both ureters bowel and on ovaries. I have just recently started feeling a bit better six weeks after op but throughout it all everyone said pains under right rib cage liver pain as I call it was nothing to do with the endo but as it is now starting to disappear I think it must have been.

I was lucky to be transferred to an endo specialist as gynaecologist didn't know what to do with me so I think you really need to find a specialist and get a second opinion.

Please try not to be too down, I know how you feel. Try and tell yourself there are better times ahead

[lisaevs]

I had a lap last March and they also found no endo I have had most of the symptoms you have had as well and also feel something may have been missed somewhere they told me it is prob ibs had screening for cealiacs disease but no colonoscopy referral I have taken ibs meds which don't really help I'm currently trying another contraceptive pill as tried one which made everything worse but this one helps a bit just by the fact that I take them back to back so don't have periods but still have a lot of pain I find exercise when I can helps my mood I to went very depressed after surgery and didn't now what to do some days I still struggle I am a nurse myself and I'm sorry to hear you have lost your job maybe a private referral to a specialist may help for us both I did ask go and gynaecologist for a referral but they said lap showed no endo so wouldn't refer me I've also asked for a hysterectomy I'm 46 but they won't consider that either not got any wonder cures unfortunately but just wanted to say I feel for you and what you are going through hope you manage to get something sorted out xx

[Hidden]

Hi Hollie,Just joined this and saw your post..Change your doctor until you get one that is going to listen to you,I had the same from 12 yrs old until 36,agony pain sick,couldn't cope with the pain and other symptoms,had explotorys,scans same as you nothing came back no endo nothing,then as I got older and traumatised at all the yrs suffering pain so on,I went and demanded a hysterectomy I had enough,34 no children and pretty sure couldn't have anyway,they were not to happy about my age and tried to talk me out of it,I carried on told them no its me that suffered for years!!So comes the op decided to leave ovaries cuz of my age,when opened up was not good cervix couldn't be removed it was stuck,so took what they cud uteru great no pain gone fab,then few yrs later had cysts on ovaries causing pain,they decided to do laparoscopy take them out,I said after to consultant could I ever have had children,he said no it was a right mess,you had endo really bad,and something called adenomyosis,never hear of it all stuck my ovaries were stuck to the sides,anyway chick my point is for all those yrs I was fobbed off and I knew it was not normal period pain and all the rubbish doctors use to say..Very disheartening most endo and definitely the adenomyotis does not show up until they open you up,I was extremely mad when i knew i had suffered for yrs and something could have been done,negligence just another silly woman with period pain,this might not be the case with you like hysterectomy being done,but keep going and persisting,who knows if they had dealt with it in my teenage yrs I may have been able to have kids.Don't dispaire!!☺

[Hidden in reply to Hidden]

Sorry Holly,didn't read you were trying for a baby,Just saw that so I didn't mean to be so abrupt!! Just I don't want you to suffer in silence like I did..your body and your rights,search out the best endo/Gyne doc.☺

[Diamondsky72]

I had the same chick,you are not on your own so many women get the same wise cracks and smirk off the doctors.

From the age of 12 I suffered with agony and terrible symptoms,told for yrs it's just period pain.

As the years went on it got worse when I had scans and so on nothing showed up,but I knew something was wrong..To cut a long story short I finally had a hysterectomy at 39 with my persistance as i could no longer stand the agony,but my ovaries and cervix had to be left in because it was all stuck,I had Adenomyotis which i never heard at all .That was the only way they found out I had anything,it doesnt show up in scans at all,and neither does endo always.

Please be Persistant don't let the sarcasm from the docs make you give in,it is your body and you have to suffer it.I know it can get you down its awful you have to fight them to get it sorted out.I don't know how old you are but I do hope something can be sorted out they will just leave you if you don't put your foot down and fob you off.Be strong.Huggs x 27 yrs I suffered I was traumatised by the excruciating pain,don't leave it as long as me.x

[EndoHubby in reply to Diamondsky72]

Hi Diamondsky72.

Did the hysterectomy help ?

[Diamondsky72 in reply to EndoHubby]

It sure did no agonising pain anymore,it was the best thing I ever did fantastic!!And I would tell anyone that is suffering badly to take a look into it,because most the time these poor women are left to suffer with no answers.❤

[JKGD]

I hope not too late in replying but after waiting 2.5 years for many laparoscopy to treat "probable" endometriosis , I have been told there is nothing there. Nothing at all. My uterus and ovaries look healthy , there is no scar tissue or adhesions which I am completely surprised about considering I've had an ectopic and cyst removal on left tube twelve years ago . Left tube is fully open and intact as is right . They took a scraping from uterus during hysteroscopy.

That's all I was told and referred back to GP.

We have two children. 12 (with CP) and 9, and I have been off contraception for about 7 years with no luck at all. I'm sorry if I offend anyone that I currently have children and am trying for another 😳

I don't know where to go from here. I suffer with deep pelvic pain during sex or any sort of internal . I suffer lower back pain and pelvic pain immensely during periods. also I've recently (may) had Lletz done for Cin2 borderline cin3 abnormalities at my colposcopy .

I've a gynae apt at a different hospital next Thursday and wondering what questions I should be asking . Any advise would be much appreciated.

Thanks xx

[1880emma]

Have they mentioned that you might have adneomyosis instead ? It won’t show up during a lap as it grows in the muscle wall?