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
Written by
rubine7521
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Morning! Xxx Far too many stories similar to yours and it’s absolutely heartbreaking. Has definitely struck a chord with me, as I’m shedding a few tears after reading your post! Why do we have to suffer so many years before being taken seriously? Aaaarrrrgh!!I was vomiting every period for two or three years, which progressed to being unable to keep any food or drink down while on my period. I got told the vomiting was probably psychosomatic, because I was so upset at failing to be pregnant every time a period came!! Patronising, insulting and dangerous words from a so-called expert gynaecologist. I had even paid to see him privately 🤦♀️ He had me doubting myself & thinking I was weak, when I knew that I was vomiting purely due to constipation and pain.
I lost loads of weight due to all the vomiting too. Was suffering from severe constipation, which turned into a full bowel blockage. Ended up in A&E with the pain, was admitted and operated on immediately. A deep infiltrating endo growth had completely blocked my bowel & I had to have that whole part of my bowel removed.
I think you deserve a second opinion from someone expert in interpreting scans and finding endo, as it may be that your previous doctors simply don’t know what they’re looking at!
You could also search for a gynae with specific training in endo (declaring an “interest” in endo is not necessarily a guide to their expertise in this area… e.g. the gynae I saw!)
If your GP is not helpful, consider changing GP too. But often, if you go in armed with knowledge of treatment guidance, they will give in and get you a new referral to the right place for you.
Good luck! Xxx
PS: I have back, bowel, bladder, sides, thigh pain, vaginal & rectal pains, regular raised glands & headaches, plus increasing joint pains. I’ve had loads of blood tests, finding nothing significant apart from anaemia, for which I’m taking iron tablets. A rheumatologist has said that I seem to have the beginnings of arthritis and levels of fatigue possibly pointing to Chronic Fatigue Syndrome. But all these symptoms seem to be so common in endo sufferers, that I believe it’s all part of the endo itself, having effects on our immune systems.
Thank you so much for reply, means a lot just to be understood! I shall be paying for private scans i think and then the plan is to gets a second opinion, I hope your doing ok x Keep smiling =) xx
I'm going to echo the fab advice from the person above, please please try and get a referral to a proper BSGE registered endometriosis specialist. Being failed for so long is absolutely disgusting, but sadly very common. If you go onto endometriosis-uk.org then you can find information about getting a diagnosis and finding a BSGE gynae. If you can pay private to see them first and make sure you're happy with their plan for care etc, I would do that (in fact I did lol). If you go for one that has both a private and an NHS practice then you can ask if they would see you on their NHS list and what their waiting times are etc. My gynae is a specialist, I paid privately to see him and then he wrote to my GP to say he wanted to see me on his NHS list urgently if I was unable to do the private laparoscopy. It really helped when I went to my GP and said I want to go to this specific hospital. It was still within my catchment area too, so I was able to do the referral regardless of me having severe endo or not, because it was a second opinion referral so I was entitled to request a hospital of my choice (within my catchment area). It was a good job because my endo was quite bad and he had to free my bowel from my uterus!
I'll also add that general gynaes OFTEN miss endo on laps. Endo is small and thin like a scab or cling film, it hides and can't always be seen if you don't know what you're looking at. And let's face it, mist general gynaes know lots about a vagina, and nothing about endo. A bulky uterus is classic of endometriosis too from everything I've read (not a doctor so please please don't take my advice as gospel!), so you should absolutely be seeing someone who is fully qualified to actually help. Adenomyosis also might be hard to see during a lap from what i know, especially by a general gynae. From what I know MRI scan is good at picking up deep infiltrating endo within muscle and organs, so this might be a good option? I'm going to ask about this myself as I still have pain after my lap.
Hope all this helps! What are you doing besides medication for pain relief? Any heat or supplements etc? Xxx
Thank you i will look into a specialist in my area and ask the gp about a second opinion, I take the gabapentin and thats it so far, been through many painkiller but they all have side effects sadly, I shall keep trying x Thank you and keep smiling =) xx
I use heat pads and hot water bottles when i need too, havent tried the tens machine yet been researching them (dont know much about them) im under the dietitians at the hospital due to excess weigh loss x
TENS is a good distraction, certainly not going to magically take everything away but I've found it does distract from the worst of it! Has the dietician suggested the Fodmap diet at all? Again it isnt always helpful for everyone, but lots of us have had positive results from reducing things like caffeine, dairy, wheat, gluten, sugar, red meat, soya and alcohol (mainly because of the sugar). And increasing anti-inflammatory food groups like green leafy veg and iron rich veg. Doing the Fodmap helped me notice that i can manage wheat, gluten and dairy in small amounts. Small amounts of caffeine aren't too bad for me either, but i switch to decaf after 11am. It also helped me find out how badly red meat and alcohol flare me up! I had pork yesterday and my stomach is more swollen today, I normally don't eat it but the pork sunday dinner was just too nice to avoid hahaha. Xxx
Omg I can relate to your post so much. Ive suffered for years in pain,which was made worse following the birth of my son 4 years ago, afterbirth I suffered an endometrium infection that turned sepsis, I also had to have blood transfusions. I have also suffered with cysts , told they shouldn't cause pain.I had a lap in May & was sterilised at the same time, I was told I have adenomyosis but to just ignore the diagnosis & basically get on with it, my diagnosis was even left out of my lap report.. after weeks of feeling depressed I decided to go down the complaint route, I am now waiting for a hysterectomy.
It's awful how we're left to suffer & feel like it's all in our heads.
Please keep fighting, u deserve the right help & support.
Thank you for your reply x sorry your having a rubbish time, its very difficult to keep going sometimes innit! But we do lol Im here if u need a chat too =) Much love x
There is some fantastic advice above I just want to add how maddening it is that this is still happening. It makes me so angry. Many of us have been misdiagnosed, dismissed and belittled. I learn that to be taken seriously with this condition you often have to make a fuss. Also I found I only visit the doctor to tell them what I want them to do!! It’s hard because when you are in so much pain it’s hard to be strong and to persevere. You’ll need to TELL the Doctor what you want - don’t ask. If you can go privately I do recommend it but still, private doctors are also under a lot of time pressure so go prepared and use the time wisely and insist on what you want. Best wishes and I really do hope you get some answers soon. x
I can relate to your situation and the replies you have had. It took nearly 30 years to be diagnosed. I was also belittled and made to feel it was in my head. It is very disturbing that GPs have no/little knowledge of the condition that affects so many women. It is just so wrong that you have to fight to get any form of treatment. Good luck on your journey.
Utterly understand your pain and frustration. There are no words sufficient to navigate such an experience. It took medics 44 years to diagnose me and what’s been endured along the way is cruel and unspeakable but breaking the silence is so important. Grasping the level of damage caused key in putting an end to such farcical treatment and behaviours. Get better ❤️🩹 xxx
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