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Endometriosis UK
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I’m so fed up :(

Background story - diagnosed with endo 4 years ago after 7/8 years of pain. Minimal endo found and lazered by general gynaecologist. Went back a year later as still in loads of pain, another op with no endo found and Mirena coil fitted. Mirena helped for 8 months then all of the pain returned so had it taken out.

Got myself referred by my GP to a BSGE accredited centre after my own research. Thought I had finally found my answer. The doctor explained that my endo has probably been missed and is growing deep. Told me to go to pain management first. Have been with them a year - have had 2 rounds of injections/steroids to help with my nerve numbness and pain that I get in my right leg and bum cheek.

Finally spoke about an operation with the BSGE and he turned around and said he would have to dissect my nerves and still may not find endo. I said I would have a think about getting the coil again if it helps for one more year and he then said he didn’t need to see me again?!?!

My pain is horrible, I’ve had two days off work because of it. It hurts on my right side to urinate and poo and it’s difficult to sleep as my lower back and right hip is killing me. I’m used to this horrific pain as have been dealing with it half my life now. I’m fed up. I feel dismissed, once again, and this time by a BSGE hospital!!!

I sent them an email asking if anymore tests can be carried out such as an MRI or more tests to figure out what is causing me all of this pain!!! I’m so fed up. Sorry, just wanted to rant really.

22 Replies
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Disect nerves?

Where exactly does he believe your endometriosis is?

How is disecting your nerves a treatment? Surely he is intent on getting in there and sourcing your deep infiltrating endo to remove it?

Have you considered the Zoladex injection or such that shut down the ovarirs ie killing the supply of estrogen to your endometriosis?

I still believe deep endometriosis needs to be located and removed.

Can you ask to be referred to another BSGE he sounds like he was on an off day or hes just not a affible man, which given your pain, like all of us you need a bit of tlc.

What have you tried for pain management, gabapentin or pregabalin are neuropathic pain relievers.

Bless you.

Let me know

Helly

X

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I really don’t know anymore. He said one thing when I first saw him, telling me that my pouch of Douglas felt tender and that it’s probably growing there, and then when we finally spoke about surgery he said he would have to have a neurologist present because of the nerve numbness and pain that I get. I never had a proper conversation with him about the operation, just a telephone call. I think he was trying to put me off it because it worked. On the phone he told me that there is only a 20% chance of finding endo because of the last operation I had 3 years ago that didn’t find any. Even though I was diagnosed with it the year before, and all the pain I had before diagnosis is the same I have now. I know what the pain is like and I know my own body but somehow doctors leave you doubting yourself a lot of the time...

I have been on lots of different hormonal pills and have tried medication including pregabalin and none of them have helped. Like I said, the Mirena seemed to really help me for the first 8 months but then my pain returned and I got anxiety and depression. My body can’t seem to handle extra hormones and for this reason I do not want to try zoladex.

At the moment I try natural ways to help with my pain such as exercise like running and yoga. I have a tens machine and I am vegetarian and gluten free, and try to avoid dairy at all times. But sometimes none of this helps the bad pains I get and I result to taking strong painkillers.

I know I have to live with this condition for most of my life but I’m just so fed up and still don’t have any real answers after 13 years of going back and forth to doctors, hospitals etc.

Sorry! I’m really ranting! X

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Its perfectly fine to get it all out, thats what we are here for 😉

You have nerve numbness, I actually believe now hes probably afraid to operate on you, if you currently suffer from numbness in parts of your back or legs that could be a put off for a less confident endosurgeon...I am really sorry to say that to you but it could be a factor as to not damage you further for the risk of a malpractice case or the like.

I believe 100% you have endometriosis.

Lots of women cant handle the extra hormones I never could take the pill and couldn't handle the positioning of the coil whatsoever I bore it for 8 months of agony. If you could revisit the coil as an option again to buy you time to get to see another BSGE specialist. Dont forget you can write to their PALS department if you feel you have been left without a satisfactory explaination, investigation and management of your condition. It doesn't have to be a complaints letter just a letter of concern regarding your current options.

Remember that the amount of endometriosis found doesn't necessarily relate to pain severity, some womens endometriosis deemed as mild is far more crippling to them that stage IV in someone else. Its different for everyone amd it can be hiding behind organs and deep infiltrating

Thats why the BSGE guy needs to go in there to investigate!!!.

Did you get an MRI of your womb to check for Adenomyosis of the womb as they say about 50% of endometriosis sufferers also have Adenomyosis.

Ask for as many referrals as you can.

Well done on your pro activeness with exercise and diet.

Good luck.

Helly.

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Yeah I do get his concern for surgery, I really do, and I am a bit nervous to have it too but I would like more options and tests. No I have never had an MRI done and that’s why I wonder whether they will do one or not. I have emailed the hospital asking for more tests so I will see what they come back with.

I may try the coil again, I know that I can take it out anytime I want to. I’m just a bit nervous to have it again as I got anxiety and depression with it last time.

Thank you for your responses, they are very much appreciated!!! Xx

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Have you considered a wee small dose of anti depressant to deal with the side effects of the coil? No harm in it whatsoever. Endometriosis causes both also. Its a vicious circle!

Im on one and have been for years. I just need that extra help and I suffer chronic fatigue too.

Your guy atm sounds hesitant and you know and you know your body also.

Something I read lately is that peritoneal fluid they can assess it (from your abdomen) can indicate if you have inflamation and or endometriosis. The other tests can also be a cystoscopy or investigatory hysterscope.

MRI didnt show my endometriosis in MRI in March 2017 yet by March 2018 on opening me I was riddled with it.

My initial diagnosis was a bulky womb, Adenomyosis.

Good luck keep in touch on the thread.

Get yourself all your tools ready in your tool kit to sooth yourself and keep you becoming elgilfed by this pain. Heat patches from bargains shops work great at 2 for £1 or £1.99 etc. I apply to the flank area of my back.

Good luck.

Helly.

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Yes I do have some but just didn’t ever take them, I know that is an option. I probably should just try the coil again, I just need to grow some balls lol. Thank you again xx

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Dont we all wish we could grow a set of balls eh 😂😂😂😂

Goid luck

H.

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Dont give up something will work for you, you just have to find it. I had mild endo lasered in my pouch of douglas too, was expecting it to be everywhere because of how ill it made me and when the pain flared up i had to go to a an e and be knocked out on morphine. I did my own research and changed my diet. I was already dairy free as im allergic, but i cut out refined sugar and all wheat and gluten. I felt crap for a month because your body has withdrawel from not having gluten, but after that the pain was so much better! A couple if paracetamol would do it. I was still ill in other ways as it also, and still does a bit, gave me nausea and fatigue, but minimal pain. Im not saying its for you but just letting you know there are things you can do yourself that drs wont tell you x

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Hiya, yeah I cut all of that out of my diet too and exercise 3-5 times a week. I haven’t had any endo removed from my pouch of Douglas as I haven’t had surgery from a specialist yet. The BSGE doctor said my POD feels tender. I get shooting pains up my vagina and bum on a regular basis and I bleed from my bum when I’m on my period. It also hurts to poo and wee usually the most when I’m due on and on my period. I read somewhere these are symptoms of endo on my pouch of Douglas and I wish I could have it removed from there if that is the case! Thanks for your reply x

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It sounds more like rectal or bowel endo. Can you change your specialist? Most do the bog standard but mine was fantastic so there are some good ones about. You can look up all specialists at your local hospital online if you havent already x

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And by specialist i just mean whoever is dealing with it at the moment x

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I just want an answer as to where my endo actually is and if the endo hasn’t grown back then an answer to all of my pain. It’s just so so shit. I have emailed the hospital and have asked if someone else can see me xx

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I know it is, and no one seems to want to really help its a constant fight to find someone who does. I had it since i was 11, now 39, took most of my life to even get a laparoscopy and thats because i demanded one. Was always sent home with period pain, ovulation pain, growing pains, oh it a virus, its salmonella, all kinds of shit they tested me for and not once suggested endometriosis! It makes you angry, and broken,and takes away the way life should be. All i can say is please dont give up. Keep trying, and you will get there. Once you do find a good specialist youre on your way. I made sure i had a woman too, men just dont understand at all, dr or not x

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Its an elusive b@sdard is endometriosis. Its actually a curse. I dunno how this plague started in otherwise 100% tip top healthy women. Im so p!ssed off.

😫😔....

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Thats superb...I might really dedicatedly try come January (re diet)

Can I ask you -

Were you hollering like a banshee that they give you morphine for pain? I look too "well" when Im sick and I smile as a nervous tick so they NEVER believe my pain.

Great that you turned it around for yourself, considerably!

Helly.

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I was screaming and crying the first time, on a trolley in a and e. I remember literally not being able to take the pain anymore. I remember shouting,” i cant f*****g stand this anymore!”,through the tears. They couldnt ignore me as everyone was looking and you could see the pain in my face. That was last september. The nurses on a and e even said to me as i got admitted eventually,make sure you tell them how much pain youre in! The drs however, were shite. Waste of time, they didnt even care really, couldnt wait to get me out. Dosed me up on tramadol and sent me home with no answers of follow ups. One of the nurses said to me sge thought it may be endo. I didnt know it was then,but looked more into it and suddenly it all made sense. So went to the gp and just told her what i wanted her to do, and just lucky i got a great gynae dr who has done all i could ask for and has also referredme straight to fertillity as its messed all that up aswel. I have a heart shaped womb, though i havd a 4 year old and thats the first time ive been told that, and sluggush tubes, so im still not out of the woods. But yes cutting out gluten especially has been amazing for me. So worth it to not have all that pain x

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Quick question: is it possible you have Adenomyosis in addition to endometriosis?

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Possibly, this is another reason I would like more tests done however I understand it is extremely difficult to diagnose adenomysis.

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I'm sorry to tell you it seems deep infiltrating endometriosis and the lazered endo could have provoked even more damage because when a non-endo specialist performs sugery on an endo sufferer 1) if it's not even excision surgery, endo is not removed at all and 2) they don't know how to perform surgery to minimize adhesions.

Your only option and #1 priority is to go to an endo center and get excisoon surgery performed by an endo specialist with years and years of expertise. You might want to ask for Visanne or other endo-suppressing hormonal treatments after the surgery. You might want to start an endo diet and take supplements as well (you can start even before surgery). Then you should talk to a neurologist about possibly getting an implant for tje damaged nerves and possibly pelvic floor therapy. All of this should be with physicians who have worked with women with endometriosis.

I would refer you to an excellent center I know I'm in my country which can offer all of this but I'm not from the UK so unfortunately you should ask people on this forum or on FB groups.

Please only get surgery with an excision specialist with thousands of surgery experiences otherwise it'll be pointless.

Best of luck!

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Hi there,

I am with a BSGE specialist at the moment and he has been the one who has kind of dismissed me, so I feel like all hope has been lost considering he is a specialist and performs excision surgery.

I have changed my diet and did this years ago. It’s just shit what we have to go through!!!

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I am not surprised you want to rant. Sometimes I don't know which is worse. The pain itself or feeling helpless with no positive plan forward in sight. Has any of your doctors prescribed you with medication to help with the pain?

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I know, it’s rubbish isn’t it. My GP is really understating and has prescribed me with codeine and always says that if I need a higher dose to let me know. I try to only take them when I’m in lots of pain though as don’t want to rely on them!

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