Just feeling a bit let down and fustrated

[Belial]

I have had pain for about a year. Had a svan with a burst cyst which was clear on my 2nd scan but pain and a solid feeling abdomen. Drs dont seem to be giving me any information and my last gyno appointment was just upsetting. I don't know if the pains and discomfort I have are endometriosis or not and really could do with a community who is experiencing it to talk to.

[Lady1978]

HiSorry to hear this

Recently i felt i had no information and wasnt in control of what was going on

I couldn't speak to specialist not my own gp i went back to basics and wrote a handwritten letter to my gp basically begging for help and thankfully within 24hrs she called me, explained what she knew and then requested all scan ect and is now in regular contact with me

Sometimes i feel they don't realise we Dnt know whats going in and they assume perhaps we know whats going on

Not sure if that helps or not

[Belial in reply to Lady1978]

Hi lady1978

Thank you for responding.

It's just been so disheartening to have the Dr tell me my last scan was clear (4 months ago) so you are fine.

The recent gyno didn't even examine me, she just asked questions and focused on my having 2 poos in a day as if that was the worst thing in the world. Then focused on my irregular periods and wanted to put me on the pill to regulate them. They don't cause me problems just irregular. When I said no she then decided to treat me with the pill for 3 months to see if the pain goes and comes back to confirm its reproductive system now bowels.

I have severe pains a week after my period on the left side side where my cyst was), back pain and a hardened stomach. My mum felt me and agreed it's harder on the left than the right but the pain spreads upwards so this can't be reproductive according to gyno.

I'm going to demand a 2nd opinion as the pill screws with me big time but the gyno just refused to listen ans that was her only treatment plan. I caved and agreed to it (not going to take them).

I just dont know if the pains and discomfort I have is ovaries or not and no one is willing to say if these are possible pains for endo or not. I just want to cry. I have 3 months before they will look at it again and want to to a laparsopsy (sp?) As that's the only way to confirm but I have read MRI scans can confirm it too. I don't want to be opened up without other options being explored.

[celiasmileteeth in reply to Belial]

Hi, I would ask again why pain that spreads upwards can't be reproductive. Pain can radiate - this is why heart attacks sometimes manifest as arm ache or toothache. Also, endometriosis can affect the chest, so it is perfectly possible to have pain from endo in that area. Laparoscopy is the only way to diagnose endo accurately so if it is recommended for you I would go for it. My daughter is an ambassador for Endometriosis UK (@miranda.burns on instagram) and she posts loads of information and advice on her instagram and her YouTube channel. Do go and have a look. Good luck.

[Nikkky in reply to Belial]

Sorry you are suffering, I understand your frustration. I’ve been dismissed and fobbed off every time my symptoms have returned. It takes so long to get anywhere with g.p’s etc and in the meantime we’re all suffering. You need to see another g.p if that one isn’t listening to you. Then ask to see another NHS gynaecologist or if it’s possible do a self referral to a private one who specialises in endometriosis. You can then have a private consultation and be referred back to NHS for treatment if necessary. In my experience, when a g.p or gynaecologist picks up on any bowel issues they immediately go down the bowel route. Stick to your guns and don’t be fobbed off- you know your own body. Best of luck x

[Nikkky in reply to Belial]

Forgot to mention- the pill does not necessarily get rid of endo pain. I’m sure it can help some women but they shouldn’t be using that as a guide x

[dodgeviperdiva]

Good morning sweetie how's u doing today, I'm sorry to hear that ur suffering, 😔 unfortunately I have been where you are it's not much fun, it took close to 11yrs for me to get a diagnosis of endometriosis and in that time they wrongfully diagnosed me with IBS and PID 😂. I have had issues with my periods since 13 and diagnosed with endometriosis since 05, I was 21 when diagnosed I'm now 37 😳, I can't work due to my condition and have been awarded pip for endometriosis.

_My Symptoms_

* Agonising /disabling abdominal pain.

* Nausea /vomiting .

* Constantly getting infections & takes longer to recover.

* excessive bleeding

*low blood pressure

* When I'm run down i get Cold sores.

* exhaustion.

* Lack of appetite .

* Headaches.

* Memory loss .

* Mood swings .

* Body aches.

* Low moods & Depression.

* Anxiety & panic attacks.

* Insomnia.

* Itchyness all over .

* Constantly thirsty & Dry mouth.

* Low sex drive.

* excessive sweating.

I'm not a Dr (I'm getting there, although I'm not medically trained 😂 🤣 🤣) The best advice I can offer you is to listen to ur body, take note of how u feel emotionally and physically, what type of pain u experience and when eg, I experience 3 types of pain, I always have a low cramping pain then when I'm ovulating I experience Shap stabbing/ tearing pains and a tight band (closest I can explain it is pregnancy contractions) when ovulating or on. I've been dealing with this shit for 24yrs u have to be hard with ur Dr's and be ur own advocate, don't let them pressure you into anything ur uncomfortable with. I hope you get the help u need but if you want to chat plz pm me I'm always available 😂 😊 xxxxx