Total meltdown at the doctors

[Summer_3]

I have been suffering with pain on and off for nearly 6 years now and no answer from the doctors the cause. But when reading on the internet my symptoms sound like endo :/

Since early April this year my pain flared up again and has not gone. I have lost my job as I struggle to get dressed as the pain is so tiring. My relationship with my boyfriend is not existent as it’s too painful. I have had my bowel and bladder checked which was all normal.

I saw an endometriosis specialist 3 months ago who put me on the prostap injection and HRT for three months. Today was my review appointment with him.

The plan was for me to be on the injection while awaiting a laparoscopy to diagnose me. But now I have been told point blank that there is no way my pain is caused my endometriosis because the prostap has not helped the pain. Therefore he is not willing to operate and I am just being referred for pain management without an explanation to what’s causing the pain.

I left the room and broke down in the corridor as I am 19 and should not be in pain like this. It isn’t not normal and I want answers! I don’t want to have endometriosis but I want to know why I am in pain.

Is it right that it is no way endometriosis since the prostap hasn’t helped me? And any advice on what I can do now? Sorry if it isn’t relevant but I just don’t know what to do x

[Starry]

Adhesions can be a cause of pain and wont react to hormones and in some cases can put internal organs at risk. In my case my bowel was anatomicaly distorted and close to blockage and the Endo causing the adhesion was infiltrating my bowel wall. I'm 42.

However each surgery can risk causing. More adhesions so being only.19 that is a significant consideration and maybe what your Consultant is mindful of.

healthywomen.org/content/ar...

Additionally some small scale research indicates that some endo types, most notably Deep RV Endo can be hormone resistant and generate its own oestrogen so zoladex may make no difference to it depending upon what stage it's at. It certainly didn't work for me and I have that type.

Biosynthesis of oestrogen in Endometriosis

ncbi.nlm.nih.gov/pubmed/109...

researchgate.net/publicatio...

Hope.this helps

[Summer_3 in reply to Starry]

Thank you for getting back to me. I just feel so alone as the doctor had just written me off and had no suggestions in what to do next. Like he knew I had pain but wasn’t willing to find an answer/ cure. He is the specialist in my area but my family are wanting to pay private for me to get investigated further to get some answers.

I just want a diagnosis, even if it is endometriosis at least I will know. And the laparoscopy can give me some short term relief while I get my life back. Also if it is endo it needs diagnosing sooner to reduce the chance of infertility.

Your reply has really helped me and pushed me to keep fighting for an answer. Sorry to hear what you are going through x

[Starry in reply to Summer_3]

Glad the information helped. To have a lap or not isn't an easy decision or one to be taken lightly so do weigh up the risks and benefits of surgery carefully. It is an easier decision at 42 than at 19 and my surgeon led me there gradually due to the large size of my nodule as I was initially very reluctant.

After my first op I had breathing issues from anaesthesia, developed bladder infections and severe chronic fatigue and was off work 5 weeks.

11 weeks on I am still nowhere near right after my second even though on paper it went fine. First my immune system crashed, I developed severe viral meningitis and spent a week in hospital and I have developed secondary nerve pain that I did not before and now have developed esophagitis from the pressure of the co2 gas they blow up your stomach with.

Not sharing to put you off but just to illustrate that surgery hits your body pretty hard.

Good luck in whatever you decide and do find a BSGE accredited Surgeon in good standing. I've had a very good experience going private on my work insurance.

[Summer_3 in reply to Starry]

Thank you for highlighting what the negatives are as no one really says them. I had a cystoscopy and has breathing problems with that.

I feel like something needs doing now though as the pain is taking over my life. Where abouts are you based if you don’t mind me asking. As specialist in London is meant to be the best I have read x

[Starry in reply to Summer_3]

Which I understand and is helping you feel settled in your your decision. XX being younger hopefully you'll bounce back a bit more easily and won't have those sorts of experiences.

I'm in Norwich and decided not to travel and been lucky with my local BSGE surgeon who I saw privately.

Endo revisited FB group is a good place to research individuals experiences with particular centres. Endo uk ask us not to here as it gets them into trouble

[Summer_3 in reply to Starry]

Thank you for everything 😊 x

[Lulububs]

Hi

I had same problem.... i had pain for about year my gp was more then 99.9% sure it was endo.

I had pain constantly in pelvis that got worse when was on period which would then b a whole new level of pain. It got so bad sex was not happening at all as i was in pain and could not do it at all.

I had a colonoscopy, then a laparascopy, a mri, a ct scan and nothing....

So i go back to gp, she said i think it could b muscular im gona send u to a pelvic floor specialist... so after a year of pain and laying on sofa and only bein able to work from home i got a appointment ... i went and it was like a revelation....

It can give u all the symtoms of endo or bladder problems or bowel problems as ur pelvic floor is the biggest muscle of ur body and when it goes it can b awful.....

Mine was to tight , way to tight it was shortening my hip and pulling my stomach and vagina Muscle which got tighter more stressed or when i was on period.

I have had 4 sessions and everything has got better my pain, my periods everything..

So mayb it could b something else but u should b having a tests to see... a lap will b the only answer to it

[Summer_3 in reply to Lulububs]

Oh wow, a doctor or gynaecologist has never mentioned that to me before. I am seeing my gp on Monday so will ask if I can be sent to see a pelvic floor specialist to have that checked out.

Thank you! Are you pain free now? X

[Lulububs in reply to Summer_3]

Im prob about 70% pain free. I can go days now with no pain but then i may get stressed or anxious and it will start up again but it does go again.

I hope u have a pelvic floor specialist in ur area as gps are generally unaware of them, i kinda fell on mine as it my dr sent me to a physio and he said no i think u need to see our pelvic girl so i only fell into it with her...

i know if u google it they will tell u where there are some .. because they deal with u internally there are not many of them about u cant just go to anyone... i went to hosp yesterday for check up and my consultant had no idea where there was one???and thats a consultant in medway hosp

[Summer_3 in reply to Lulububs]

Thank you for this. It will be a great if that is my problem as it can be cured. But I will be annoyed that no doctor has suggested it before but like you said they are unaware of it xx

[Lulububs in reply to Summer_3]

Its a shame that i have had to find most of this info online and kind of fallen into it and found out by shear accident about pelvic floor problems.... it is so common with women either after a baby ur b slack or if ur like me im uptight and work out alot so im to tight but who knew there was such a thing?

It has totally worked for me i was in so much pain and i couldnt have a smear or even sex( which is not good when i have a husband but he been pretty understanding) ive had the smear but not sex yet....

hopefully it will get better soon as ive only seen her 4 times so far and only 3 of them had worl done...

U must have a laparascopy though to make sure there defo is no endo or ovary problems.

I also take transexamic acid which works a treat for me to so u may wana try that for relief on period

[Lallya]

Have they looked into your pain being caused by adenmyosis? Have you had an internal scan? Could be fibroids or cysts. I wouldn't leave it there i would be demanding to be looked at again and to have the abdominal scan and internal.

I've just had a hysterectomy at 37 due to adenmyosis this was discovered via internal scan. I also had the prostap injection which didnt cure the pain but relieved it a bit as i had no periods.

It's the best decision i have ever made i feel like a new woman now. Only 10 weeks post op but i am no longer in pain.

I hope you get to the bottom of your problems as i know how you feel. X

[Summer_3 in reply to Lallya]

I don’t fully understand what adenmyosis is? I had ultrasound scans but after I experienced a pain like something had ruptured. Thank you for your reply, while being on the prostap I have been getting sensation like I need a really heavy period and getting clear discharge. Is that normal?

A few months back the doctors suggested I could be getting cysts but looked no more into it. I am going to my gp on Monday and demanding more investigations to be done. As well as trying to get in touch with a private endo specialist x

[Lulububs in reply to Summer_3]

Clear discharge is usually when ur body is ovulating mine is same for about 4-5 days .

U must got to the gp explain ur pain and tell them ur life is being controlled by this pain and u need to know what it is before it to late as it may mess with ur fertility blah blah they will soon get u in then:..

Say u demand a ultrasound and a laparascopy! It is only way your know for sure...

Then u know if it not then u need to look down other areas, pill, tranexamic acid, may pelvic floors problem but first get a lap

[Summer_3 in reply to Lulububs]

I shouldn’t be ovulating on the prostap injection though?

The only way is to depend now, as I can’t live like this. I am taking my dad with me as he will make sure they do something! X

[Lallya]

Its similar to endo but its where the lining of your womb is growing on the outside. I used to feel like heavy period pains all the time and even worse when it was my monthly. Huge blood clots and lots of blood. Feeling totally drained all the time.

It didnt pick it up on a normal scan only a transvaginal scan picked it up.

Ask your gp could it be adenmyosis and could you be referred for an inter scan to check.

Good luck and keep me posted. X

[Summer_3 in reply to Lallya]

Oh right and my last ultrasound the struggled to find my left ovary as it was lower down then the other one but they didn’t seem concerned? I will do, I am willing to have any tests done as it’s hard to carry on each day with no diagnosis or a plan to move forward.

Thank you for your suggests and I hope you continue to be pain free! I will post on here when I have seen my gp and get things to move forward x

[Lulububs in reply to Summer_3]

Did u have a internal scan to or just external? If u have had both then demand a lap....

[Summer_3 in reply to Lulububs]

I have had both. And had a lap done beginning of April by a normal gynaecologist. The found blood in my abdominal cavity but never removed it. So that is a concern that the blood can be causing more problems and the private doctor said he wanted to do a lap to remove it but then yesterday said he want do one :(. But I am going to have to demand one for a piece of mind x

[Lulububs in reply to Summer_3]

Sometimes blood in the abdominal

Cavity can mean a cyst or endometrima has burst and left blood there i only know this coz a friend had it they generally will not do anything as it usually clears itself out.

They prob not to happy about doin a lap so close to last one as otherwise u can end up with alot of other problem ie adhesions... i know it of no help to u but there prob gona watch it to see if u get better in time..

But at same time they dhould b sending u or dealing with ur pain ie a pain clinic. If u get clots or thick blood on periods transexamic acid.

Also a womens health physiotherapist

[Summer_3 in reply to Lulububs]

Thank you for your help and support! I really appreciate it and don’t feel as low as yesterday x

[Lulububs in reply to Summer_3]

I know what it like when i got rushed to hosp 6 months ago with pelvic pain i was thinking all thoughts BAD MOSTLY!!!

I had every test imaginable then was told prob IBS.... seeing as im gluten/dairy and sugar free i cant b suffering from ibs and it wasnt food related.

So when they couldnt find anything i was so stressed and upset but i have got better by myself i dont know why i fainted that day or pain was so severe apart from my therapist think my pelvic floor just had given up and was so tight it had contracted ... but im better...

U need to get a therapist a womens one... u need to get pain meds and a good pill and also u need to get some transexamic acid as when i had my lap they found my blood was very thick and clotted quick so that why my period were so bad. There better now... so there is light at end of tunnel and ur problemay not just b ONE PROBLEM... u may have lots, ie a pelvic prob a period prob , muscle pain... it doesnt always mean endo....

I had a normal gyane who did my lap who i asked about bsge clinic she said we are all able to locate endo it just we can not all deal with it if it in a weird area so then u go to a bsge clinic... dont b doubting it just coz people tell u it can b missed.... coz it can b it not there.

[Stellauk]

I was treated privately by a BSGE credit surgeon in London. He is excellent and very dedicated to patient care. If you want can PM me for his name. As we can’t discuss such details on the forum.