Being 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

[Football6-7-2021]

Try a pain management doctor to get you until you can get into a chronic pain clinic. i am seeing one and he helped me but still dealing with issues like yours even though i'm a guy. my pelvic floor pain started with a routine prostate biopsy.

[rubine7521 in reply to Football6-7-2021]

Oh i hadnt though of that! thank you i shall get in touch with the gp and ask them about pain management doctor, Thank you so much for your reply x Hope your holding up ok, keep smiling =) much love x

[Konagirl60]

Can you hire a registered nurse consultant? It sounds like you’re being gas lighted and the doctors are covering up something? You need an advocate ASAP. Good luck.

[SouthernSally]

Are you doing any better Rubine?

[rubine7521 in reply to SouthernSally]

hi hi I would love to say yes but im still struggling on lol Gynae now wont see me again, gp wont refer as said i have had too many tests.. ? lol The pain doc is very nice but i feel i have been put down as a problem patient who just needs handling! hey ho we just keep swimming along (kinda lol ) I have to laugh or honestly I wouldnt stop crying! hope all is well with you =)

[SouthernSally]

I'm so sorry. I agree with Konagirl. I don't know if they're covering up but they are too lazy or ignorant to help you and they know something is wrong. Some people with chronic pain have "healed" from acute illness but still have horrible chronic pain. It seems to me as if your acute illness has not been dealt with, and that's bordering, if not full on malpractice. It sounds as if procedures or surgery of some sort are needed. Were you even checked for fibroids?Here in the states I've seen two pain doctors. They don't heal pain, they manage it with drugs and injections. That keeps the pain away for many. It did not for me.

Are there patient advocates where you live? You need someone to navigate the system and fight for your rights. This is not in your head! And do try to keep your weight up if you can. I think some of my pain is from moderate weight loss because I don't have much cushioning in my buttocks.

I hope you find some answers.