Help! If your doctor said....

[Laura2012]

Hi girls,

Writing to you at the present time feeling really sad.

I’ve suspected I have diaphragmatic endometriosis for a while now. It’s taken this long to get an initial consultation.

So I went for that appointment today.

Told the doctors my symptoms are as follows:

- Pain in right shoulder during my period days

- Tight painful feeling in my right side (liver, diaphragm area)

- pain during period (but what I call usual pain, though I don’t know how usual that is.)

- neck pain

- arm pain

- Also just for detail, the shoulder/arm pain is lessened when on put heat on my diaphragm area.

She straight away told me no it’s not endometriosis.

End of story.

So I burst into tears, like you do when you’re. It getting clear answers.

I’ve been put in microgynon for 6 months and told to watch my symptoms.

Failing the symptoms getting better..... the GP will THEN ask a endometriosis specialist for their opinion.

Just so you know... I did not want the pill.

What would you do?

Feeling desperate and in agony with my arm right now. Love to u all x

[vmagpie]

Hello, sorry you’re in pain and feeling so low.

You don’t have to take the pill so just see it as an optional experiment. If you decide to try it, maybe just be vigilant with a symptom diary.

I haven’t gotten on with any BC-pill, I’m sure I’ve tried that one at some point.

Maybe try seeing another specialist to do with that area of the body, explain to them you think it’s endo related and they may well refer you to the right consultants.

Good luck. All the best

[Hidden]

Hello

Your doctor cannot just discount endometriosis without any scans/surgery. I’d ask to see someone else. I had to do that too for someone to take me seriously.

You also do not need to take the pill even if it has been prescribed, you can always ask for other methods however unfortunately with endometriosis it is mainly treated/managed with the pill and painkillers.

I hope you get your answers soon! X

[AllthatGlitters]

Hi Laura2012 that’s awful, I would personally go and see another doctor and explain how much pain you are in, maybe a female GP? x

[Laura2012 in reply to AllthatGlitters]

I think I’m guna try this...only my original doctor was female. I was pretty surprised. Thanks for message x

[libbycraft in reply to Laura2012]

Hi, so sorry you are in so much pain. I would definitely get another opinion as you can't just dismiss endometriosis without further investigation. In my experience, I've actually found male docs to be more understanding and helpful!

All the best.

Xx

[Emiilykatex]

Hi, I would really recommend seeing another doctor. I think endometriosis is so misunderstood. 3 years ago following a trip to the hospital I had a female gynae tell me I definitely didn't have endo and all of my issues were all hormonal. Cut to 2017 I get diagnosed with endo via laparoscopy and in 2 weeks I'm having excision. I have seen about 8-10 doctors for my symptoms and it was only my current GP who suggested endo and pushed for a lap.

It's not in your head, don't stop fighting, they literally cannot tell you you don't have it without surgery and even then they can miss it! Keep fighting on, you WILL find someone to help fight your corner xxx

[clynch96]

I feel for you so much right now, i hope your okay and starting to feel happier. I was in a similar situation to you except my pain was in my lower extremities. I was treated very unfairly by doctors who assumed I just couldnt handle period pain, but my pain was everday and they wouldnt listen for years! I finally went to my GP and there was a new male dr, Dr hazel, who FINALLY appreciated my pain. I was referred to gyno, and then for a laparoscopy from there. I had my lap, and there was endo on my bowel, pod, bladder, kidney, womb, tubes and all over my pelvis. Even on the day of my lap i was put first on the list and was told it would take 30 mins and i was the easy surgery for the day, which is why i was put first. My surgery took 4 hrs.

DONT give up!! I didnt, and ive finally got answers which i can fling back in all the doctors and managers who didnt believe me's faces! Keep going and you will eventually find a doctor who will listen, dont let them think they always know best cause only you know your own body. X

[Holleymuzz]

Iv had different gynea problems for the pass 6-7 years, had a cyst they said wasn’t the cause of my pain and was a simple cyst all women get them it will go away on its own. Had emergency surgery due to passing out on the way out of ane after being told I just had constipation. That turned out to be a mucinus cystinoma (cystic tumour). My pain continues so I have my gallbladder removed, pain continues,

They think it’s adhesion caused by surgery. Had another laparoscopic and that time they found a little cyst they removed it. But my pain continues??

By now they are hinting the pains in my head. I begged for a year and managed to find a gynea to do an EXPLORATORY laparoscopic, so they were actually going to look around properly. They found endometriosis on bowel bladder and pod.. but they told me it’s too little amount to cause my pain they burnt it off and I need to see my gp about being referred to digestive disease. But I had heard about endometriosis and I knew that the amount of disease you have don’t correspond with pain levels. It took me almost 2 years to get referred to an endometriosis specialist clinic, they listened but even on the day of my surgery (3 weeks ago today) they weren’t too convinced and put me first of the list because they thought they would be in and out really quickly. Well I was theatre for over 3 hours, it was all over both my pelvic side walls, on the tubes towards my kidney, my right ovary, rectovaginal area and rectum... don’t give up girl. If your convinced then you keep going till you convince someone and they help you. We are the woman who are carving a pathway for future women to get quicker diagnosis and treatments! X

[clynch96 in reply to Holleymuzz]

Wow we had a very similar story haha! My comments just above yours X

[Holleymuzz in reply to clynch96]

Omg yes! And we were writing it at the same time.. could this mean.. we are long lost endometriosissisters! X

[clynch96 in reply to Holleymuzz]

Ahahaha 😂😂 i just had my lap on wednesday so still a bit high from all the drugs and found that a bit too funny! Hurts to laugh 😂

[Holleymuzz in reply to clynch96]

Hold a pillow against your tummy lol x

[AJJ123]

There is a test which costs £8.00 on the nhs which can tell you if it’s endometriosis. A friend of mine told me about this and they too have diaphragmatic endometriosis. Apparently the test also detects ovarian cancer but if you have no cysts on your ovaries (ultrasound) then it’s got to be that. I’m disgusted at doctors fobbing patients off telling them they don’t have endometriosis when they find out later, they have it. Please get a second opinion xx

[Hazel173]

Hi I was told for years that all my problems were due to IBS. They also told me a fair few times it was in my head. I pushed to get a gynae appointment and was told as I had a clear ultrasound I did not have endometriosis but to put my mind at rest she would do a lap. So it turned out that I did have endometriosis stage 1 in a couple of areas. My surgeon did not write up a proper surgery report so I cant remember exactly where. Unfortunately the surgery did not help my pain levels and ive also not had a period for 6 months. I pee like 20 times a day and have alot of stomach issues. I pushed to get an enfo specialist review or pain team review who told me under no uncertain terms that I did not have endometriosis as it had been "treated" but they would give me an mri to settle my worries. The MRI came back clear but my symptoms are still the same. Ive had shoulder and rib pain with my period for 10 years now and the specialist endo team had no idea why that would be. A couple of weeks ago I went back to my gp to speak about my symptoms. He asked me how I was and I said still the same, still in pain. He replied "so thats why you're here then is it" on not a very nice manner. He then proceeded to ask me where Ive got the idea that I had endometriosis from because he doesnt believe ive got it. He said all my symptoms are in my head.

You need to push and fight for a diagnosis and then fight for the right care and treatment. Its shocking how we are treated considering how big an impact endo has on our lives. I honestly believe I know more about endo that some gynaes as Ive got 6 books on endo and read some medical journals (as a student nurse I have access). Im just trying to get the courage to go back and be assertive with my doctor as its not a strong point for me. But my life is wasting away in front of me and not a day goes by that I dont think id be better off dead (Id never do it just the pain is that bad). My doctors just keep saying that I am addicted to codiene and they wont give me anything stronger. I used to get tramadol but not any more, my doctor said "were not going down the tramadol route again" once in the pharmacy I went to pick up my script and they said "your the tramadol woman" in front of everyone and treated me like I was addicted. Yes I depend on my pain relief but no more than I depend on a can of cola to get me through the day.

[sarahsarah123 in reply to Hazel173]

Many non-specialists can miss disease during laps, so your doctor may have been mistaken in her stage one diagnosis- and she may have left some disease behind, causing your pain to continue and the disease to grow back. Even if you only had stage 1 in the pelvis, it's still possible to have diaphragmatic endo too! Sounds like you've had terrible treatment so far but please don't give up- it is possible to get endo removed from the diaphragm!

[sarahsarah123]

Hey, so sorry you've been suffering. Just wanted to say that your symptoms are absolutely classic for diaphragmatic endometriosis, as you know- so I'd say it's very likely you do have it- don't give up and don't let doctors dismiss you! Doctors in the UK are outstandingly ignorant about thoracic endo. You should try and get referred to a BSGE endo centre (bsge.org.uk/centre/) where they should at least entertain the possibility of diaphragmatic endo. However, even BSGE centres are mostly not experienced with excision of the disease from the diaphragm. I've been doing lots of research on this (I think I also have it- just waiting for lap to confirm) and now understand it must be excised (not ablated) from the diaphragm like all other disease to have the lowest chance of pain recurrence (this is a really good site for info endopaedia.info/subtype16.h.... Sometimes thoracic surgery is also necessary for complete removal of the disease via diaphragm resection, but that's very hard to get on the NHS. However, often it can be removed from the abdominal side via another incision near the ribs- but the patient must be tilted on the operating table on her left side so the liver falls away and the surgeon has a complete view of the diaphragm- this usually does not happen during routine laps. Also, I'd join the thoracic endo facebook group (facebook.com/groups/Lungend... I've learnt so much there Good luck! x

[Plinka in reply to sarahsarah123]

Hello,

So glad I have seen your post. Me and my gp suspect endo on diaphragm due to worst pain ever and no painkillers being able to help. It’s in my shoulder and it radiates to my hand. It starts few hours before period every month. I know it’s the irritation of nerve as few months ago in a car crash I must have got the same nerve injured as I had the same pain for constantly for two months. After physiotherapists fixed my back pain went away. But it came back with next period . Now it’s also when I ovulate.

I am now waiting for an exploratory laparoscopy. Did they check your diaphragm? Did they take into account your opinion and look there? I worry they will look only in the pelvis region as it hasn’t been confirmed that I have endo for sure. Fertility specialist told me this pain could be just due to a backflow of blood. Not necessarily endo. I hope he is right but I doubt it tbh.

I also feel I might not have in in the pelvis area but just on diaphragm. I read it’s possible.

Did you get to have a chat with surgeon prior to the procedure?

Xx

[sarahsarah123 in reply to Plinka]

Hey, glad to help Yours does sound like it could be diaphragm endo, although it's less common (but not unheard of) to have no other pelvic symptoms. I actually haven't had my lap yet- it's on wednesday! Mine is with a BSGE surgeon- I told her I think it's on my diaphragm and she agreed to check, but that was months ago so I'm hoping I'll get to see her beforehand to remind her! I know she won't be making another incision by my ribs, so even if she checks she'll only be able to see the front bit of diaphragm- but I haven't even been diagnosed with endo yet so it's a start.

NHS guidelines state that the diaphragm and upper abdomen should be inspected during a diagnostic lap for endo, but I've heard from so many people that it wasn't done. Is yours with a BSGE centre? Hopefully they will at least check the front if you ask them to... unfortunately getting it properly removed is another whole issue!!

Not sure about the backflow of blood causing pain thing.. retrograde menstruation is commonly thought to cause endo but actually that theory has been thoroughly debunked (they've found endo in foetuses and even men!).

[sarahsarah123 in reply to sarahsarah123]

also, i am seriously considering writing "check my diaphragm" on my stomach if I don't get to se her beforehand 😂

[Plinka in reply to sarahsarah123]

Oh you made me laugh so much with that response 😂 thank you! I needed a good one after reading about endometriosis, Hashimoto’s, PCOS most of the day 🙈

Wishing you all the best on Wednesday! I really hope you get to speak to her beforehand. I am not sure how it works. But I think you might be prepared by the nurse or someone that will then see them so worth reminding them maybe if you wot get to see her. That’s my fear tbh and I do not even have a date for my lap 🙈

On the other hand I agree with you that it is a start as currently not diagnosed with endometriosis.

I have been seen by gynaecologist in fertility centre (two referrals were merged into one - for fertility issues and potential Endo).

There is a BSGE where I live and I pray the laparoscopy will be done there! Do you think they would do it somewhere else if they have a centre next door to them?

I hope you don’t mind me asking .. what are you hoping for? For them to find it and remove it knowing it will posssibly come back but at least you will know the cause of pain and get relief? I am so confused tbh and my husband keeps saying they might find nothing which makes it worse 🙈 but big part of me is just excited that I hopefully be a bit wiser and have some answers afterwards.

I will pray for you on Wednesday and please let me know how you got 😘

[sarahsarah123 in reply to Plinka]

Aw, thanks! Haha, what can I say- desperate times, desperate measures.. My surgeon has offered to ablate it from my diaphragm, but I've spoken to quite a few people who had that and then had worse pain afterwards, because it's not dealing with the root of the endo, it's only burning off the top, then it grows straight back sometimes worse. It needs to be excised, and in some cases the diaphragm needs to be resected (eek!) to prevent recurrence. If it is on my diaphragm, my plan is either: try and get referred to a hepatobiliary surgeon that my dad knows who works at Kings and is an amazing surgeon- he offered to remove it properly even though he's not an endo specialist, but I trust him. But if it's super extensive, I'm gonna try and get referred to the Guys & St Thomas BSGE endo clinic who I know work with thoracic surgeons to remove endo from the diaphragm. The best way is to operate from the thoracic side because that way they can avoid the phrenic nerve (the one that causes the referred pain) which runs across the thoracic side of the diaphragm and controls diaphragm function, but it's a more serious operation because they have to collapse your lung to operate from the thoracic side. Will defo keep you updated if you'd like, but don't want to freak you out because from my symptoms I think mine is pretty extensive (e.g I have bilateral pain, most people have only right sided) and I also have pain further up above my boob, so I'm terrified it's in the lung as well.. but from your symptoms I'd say you have probably endo on diaphragm only.

[sarahsarah123 in reply to Plinka]

also, if I were you I'd be as pushy as possible to try and insist your lap gets done at the BSGE centre- if you have diaphragm endo that's counted as stage 4, which should be treated at BSGE centres according to NHS guidelines. I've also heard of many women getting operated on my regular gynaecologists who miss much of the endo, and will likely feel less comfortable operating around the diaphragm!

[Plinka in reply to sarahsarah123]

It sounds like you have a plan which is great! Also it’s amazing you know where they can operate on diaphragm just in case you will need that.

So are you going to be ok with your surgeon on Wednesday ablating it if he finds anything on diaphragm?

Will they be looking a your lungs too?

Yeah I have only right shoulder pain but it’s so bad.. It’s 10th day of my cycle and it still hurts 😰

I haven’t been diagnosed with endo at all. I believe I have all the symptoms but gynaecologist I seen in fertility clinic said he can’t see anything wrong in my tubes and oviaries (apart from too many follicles) so I must be having just sore periods (I can’t even speak as so sore due to pain when period arrives) and the shoulder pain in his mind is due to some blood travelling up.

Although due to infertility he has agreed to refer me for a laparoscopy if I insist. I have no idea how to make it happen in the BSGE which we have here where I live. I don’t think I will see him again as I am not going ahead with ivf.

Do you think my GP could help? Or do I just wait for the letter and hope it’s there? I think the latter will drive me insane haha

Xx

[Plinka]

I am sorry you are going through this.

I feel the same. Plus now pain comes during ovulation too which means i am in pain for most of the month. It’s a right shoulder so it’s so annoying.

I find that the only thing that makes it a bit better is a deep freeze spray. It works for me so much better. I used to to use deep heat too. If you have not tried I would give it a go.

Also, my gp took me seriously with potential endo affer 2 years of trying for a baby with no luck. Before I was told to get a massage and get rid of my knots.

I hope you get reffered and seen by a specialist!

Good luck! Xx