Passed from pillar to post, feeling ignored and dismissed

[rubine7521]

After years of severe pain with periods, I finally gave in and saw the gp, told twas normal and to get on with it. I kept returning to the gp who finally sent me to gynaecology, told i had cysts and was normal and they wouldnt cause that much pain.

Off I go again, then pains return and i go back to the gp, end up visiting A and E several times, This continues for around 5 to 10 years, scans showed cysts and bulky uterus over this time and I eventually get a referal for a laproscopy to check for Endometriosis (after I suggest it!) Before this could happen I suffered a pregnancy loss (with retained products, blood transfusions then surgery) No scan after this oddly.

After this the pains got much much worse, many more trips to the doctor, a and e visits (vomiting from the pain, large bleeds, lost huge amounts of weight also, so now under weight loss team)

Finally got to the laparoscopy and was sterilized at the same time. Doctor told me (while i was still out of it) no endo found and if there was an element of adenomyosis have the coil it will help. Then discharged ... no biopsy taken, no follow up. I spent most of my recovery crying, i just want answers!

Pain so severe 7 days after had to go to a and e to have a ct scan but nothing seen, so left again in pain. This was in April. Various pain meds, nothing helping.

Now they have shipped me off to Chronic pain clinic (6 months wait time) telling me its nerve damage and that gynaecology wont see me, given gabapentin with no follow ups.

This does not feel like nerve damage as its still follows my periods? I have lower back pain, bowel issues, pain in both sides, swollen lower belly, pain in my thighs,pain in my under carriage, glands all up in my neck, headaches and now my joints painful. Whenever i visit a doctor they tell me my blood work is all fine so it must be in my head...(rude)

Im at my wits end with this, I have no clue where to turn too now.

Sorry for the long post ( i even trimmed it down!)

Any thoughts or advice is very welcome,

Much Love and keep smiling xx

[bantam12]

Unfortunately your story is very common and there just doesn’t seem to be an answer for many of us with chronic pain, the doctors often don’t know what’s causing it, one doctor told me “we are good at telling you what it isn’t but we often can’t tell you what it is” and that’s true, when all possible causes are ruled out it leaves us with nowhere else left to go.

[rubine7521 in reply to bantam12]

Sadly this is very true, thank you for your reply =) Keep smiling x

[WhatSayU]

Dear rubine 7521

I’m so sorry to read all of that post. It’s heartbreaking and I wish for you that someone in the field of ‘caring profession’ will be able to give you what you need.

As a retired nurse I am so saddened at the state of medicine today. I feel we who have chronic illness are all ‘jumping through hoops’ and I’m afraid the nhs system has not got any answers because they haven’t got a plan..I believe the best way to get to root cause of disease is to take a thorough first assessment.

Very very difficult in 10 minute allocated time At gp surgery. My added stress starts there trying to say what I need to. On 2 occasions last 4 years I’ve been told ‘times up’ - trying to book 2 appointments I was told by receptionist I wouldn’t need.. sooo many people tell me what I need… it’s a wonder I don’t lose my mind too.. Bottom line - no 1st complete assessment was ever taken of what I thought, or the dr thought, could be root cause of disease and this is what I believe patients need.

As an assessment nurse for last 8 years of my career that is exactly what I did. The assessment must include the social, spiritual, financial, psychological, emotional, as well as the physical aspects underpinning chronic disease. These questions/answers lay out the whys, in it’s entirety. Only then, can a plan of care be drawn up that covers all aspects and hopefully starts the process of root cause disease.

In my opinion, the bio-physical model of care is no longer fit for purpose. We are living in a very complex world right now and complexity means working harder and smarter… again, I’m my opinion, many diseases are often symptoms of what people are struggling with - including being ‘pushed from pillar to post’. We are human beings and can no longer be treated as a machine that’s broken down.. we are also intelligent beings and (often the enforced ‘expert’ in our condition researching what needs researching whilst feeling very unwell). Diagnosis are being handed out like sweets ‘pick n mix ‘, and off we go trailing around buildings and medics we are referred to… until yes, we are deemed to be suffering anything but the reason we went to them in the first place..

I say all of this, as another person/patient, dealing with the pressures of being pushed ‘pillar to post’ please read my post from last week. I felt so alone and broken from mistreatment of my actual health needs at that time.

I love 💕 that you can still have a positive smile. I’m doing my best to do that lately.

Sending you blessings and better outcome for you.

[Desperateforrelief]

I am so sorry you went through this! Unconsciable! I am here to validate you. It is not normal, my uterus was 1 1/2 times it's normal size and I was getting really painful ovarian cysts as well. I had adenomyosis- it is related to endometriosis and is supposedly more painful. I believe it is where the endometrial tissue lands as some women have endometriosis and don't know it. Endometrial tissue runs through the muscles, etc. of the wall of the uterus. Causing extreme pain with periods!! In 1988 I had 2 doctor opinions that the only way to stop the pain was a hysterectomy. My ovarian cysts got worse, and I'd be in considerable pain each month from one side to the other and back again. My cysts would grow until they burst. I was unable to stand for more than 10 mins at a time during the painful times. I did dishes sitting at my kitchen table. It is seeming like there is less compassion now, especially in the last 5-10 years. But it was lacking even way back - mostly from ignorance of the issue. If they couldn't find a reason for pain - it's in your head! I had a left oophorectomy in 1992. They left the right for hormones, even though there was a 1" cyst on it. By 1994 they took the right. I did not have pain after that and was put on hormones. It seems rather drastic and you'd think by now they'd have figured out how to deal with this. Gabapentin doesn't help my pain at all - but everyone is different. I have friends who say gabapentin helps them. I do have pudendal neuralgia from transvaginal mesh sling complications. Which was for stress urinary incontinence, probably due to early hysterectomy and delivering 9lb 1 oz baby at 22. I wish you the best! I hope they figure out what can help you! I told you my story so you know you're not alone and to give you confidence to keep fighting for your health.

[WhatSayU]

thank you for sharing, rubine7521. Im sorry too that u suffer and agree compassion does appear to be lacking, by many in the profession.

My daughter suffers with poly cystic ovaries and when I see her ‘doubled up’ in pain each month I’m very sad for her too. She has 3 energetic boys and each month loses a day or two with agonising pain. She also suffers mennorhagia these days and has been on a waiting list for a 15 min procedure for nearly 3 years now. It’s heartbreaking and she has just given up her job (which she had gone part time) as she cannot work when her period starts.. what a shambles society is in.. a 15 minute procedure would have her up on her feet caring for her boys and back in the workplace.. there is little sense in decision making top down surely ..

Yes, your sharing has helped - I remind myself I am just one other person suffering in the current mayhem. Let’s hope new government cabinet does sweep clean the nhs!

Wishing you well.

[amberbrown]

Sounds like endo to me.