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Endometriosis UK
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I can’t keep doing this... help!

Hi Everyone,

I recently made another post so won’t post everything again but basically... last month I had a laparoscopy surgery to look for endometriosis. They told me that nothing was found. They suggested going on a weight loss pill which is used in PCOS but my doctor won’t diagnose it.

I have been told to loose weight but find it a real struggle. I have asked the doctor what the next step is only to be told there is no more treatment.

Cue the next period which has turned up in true form. I am in extreme pain, bleeding heavily, feel sick etc. This is only my second day and I’ve had to stay home from work.

I can’t do this for the rest of my life. What are my options? Can anyone help?

Thanks in advance.

9 Replies
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Hello

I'm so sorry to hear how much you're struggling and how you seem to not be getting any useful help from the medics you've seen. It's so frustrating and disheartening.

I was in a similar situation 2 years ago. I don't have any period related issues. At that time, my symptoms were debilitating fatigue, abdominal pain and swelling. I also had hip and back pain and couldn't wear tampons or have sex due to pain. I also other weird symptoms like rashes and eye twitch (for 3 years!!!), mouth ulcers, etc etc. I was actually under weight at that time but have gained 3 stone since (I'm now normal weight) but I know that Dr's can be so distracted by weight issues and don't seem to understand its not just as simple as 'lose some weight' residual if you have hormonal issues going on.

I was tested for all sorts of things before endo was suggested and was finally given a lap 'to put my mind at rest' as the gynae was adamant my symptoms were not gynae related. Low and behold, my lap found nothing, just 2 large fibroids and so I was discharged with ibs and stress related problems. I felt so let down and abandoned by the Dr's. At that time, medical intervention was my only hope and they were offering me nothing.

At that time, I was still working as a psychologist so I put all my knowledge to use, plus I started looking into alternative approaches. I went to therapy, started daily meditation, yoga, reiki, acupuncture, reiki, dietician, reflexology, chiropractor... You name it, I tried it. Everything helped me cope though I'm still dealing with pain and many symptoms, which are now all worse.

Earlier this year, in May, I eventually saw an orthopaedics Dr for my chronic back & hip pain and had an mri. He thought I had arthritis but no, what he found was severe endo throughout my pelvis!! 2 years after my clear lap. I'm now being seen by the specialist endo centre and waiting to hear about surgery.

The reason I share my story is because its never 'the end of the road'. You just don't know what will come up next, the road is continuing, you just can't see it. You need to trust that it will all be OK.

Even though I had 2 years of being really unwell and dealing with it with no diagnosis or medical help, in many ways, I'm glad it has happened this way because through all this difficult time, I have learned so much, that I don't I would've learned had I got diagnosis and treated. I can now cope so much better and I understand myself so much more. I can see now that my body was a mess but so was my life and I'm actually grateful for this illness to cause such a huge derailment that has made me make massive changes to my life. In some ways, I feel that becoming ill has saved my life because I was on track to living out my life being desperately unhappy in every aspect of my life but being completely oblivious. I was going to waste my life.

I'm still unwell, still to get treatment and can't work due to all of this but I'm optimistic for what lies ahead and trust that will be ok. I feel at the moment, I am in a healing part of my life and once this is done, I will be able to really live my life that is true to me.

My advice to you is to really listen to your body. I believe that you will we do instinctively know what we need if we really give ourselves the chance to listen to our body's wisdom. My body was yelling at me to stop but I ignored it for so long. OK so the Dr's don't hear you, well try find someone who will. Just tune into your body and see what you think might help and give that a try. Trust your instincts. Xx

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You are the 1st person whom has shared symptoms that I had with my endometriosis monthly which included pink eye, severely stuck together conjunctivitis, a prickly heat type swam large rash on my neck right after my period would stop, an itch like clockwork on the back of my right leg, migraine, joint fatigue, fatigue, swolen fingers. I had no Idea I was riddled with endometriosis I had expected Adenomyosis only from my mr I of 1 year+3 prior to surgery.

The later stages of it had me bedridden and periods had me 3 days in pain due to clots and pain and bleeding and bowel issues. Endometriosis was removed off my bowel also.

Good luck with your upcoming surgery you won't know yourself.

I have 3 bulging discs and an annular disc tear so still in back pain but the rest have vanished ^....thank goodness!

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I really like your response, so detailed and helpful!

I agree with you that if one Dr doesn’t listen, find another who will! I was seeing a consultant gynaecologist for 1 year and then was discharged when the different contraceptive pills didn’t work for me. I had not had a lap for diagnosis or anything! I was then advised to seek a referral to a specialist endometriosis clinic; I managed to find a GP who listened to my concerns and agreed to the specialist clinic referral; my appointment is this Thursday.

Take care and stay strong ladies!

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Good luck for your appointment you are now on the right road to help with this condition which literally s@cks!

Best wishes

Helly.

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Thanks! Unfortunately I was disappointed as she just started me on the implant and then discharged me without a follow up! They don’t want to do surgery as they say it’s invasive

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Is it NICE or PALS we can write to for support regarding our treatment in gynae health issues....is the implant the stop pregnancy type? Depro V? how are you feeling now on this?

Are you able to be active. I hate to say this but before I couldn't, exercise was crucial in putting this to the side and soldiering through, a focus and a goal and something for me to keep me active and occupied.

Your next step could have to be another MRI yet they are not going to see you as urgent as you just had a negative lap....Private care is the other option I had to go private getting nowhere on the NHS fast.

Start your diary of treatment by the GPs, involve the governing bodies if you feel unfairly treated. Ask to be referred for BSGE centre. You are not the 1st to have a negative lap for endometriosis it could be hidden deep and behind organs.

You keep your chin up you will get there it will just be a battle as it is for most of us.

Best wishes

Helly.

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Hi!

Unfortunately I don’t have any answers for you but want to let you know that i’m In the same position and equally as frustrated! I’m waiting on my next gynae appointment but not particularly optimistic about it, meanwhile i’ve Had to cancel plans with friends and take days off work this week due to the pain i’m In.

It’s so frustrating but hang in there, you’re not alone!

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Poor wee pet x

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So sorry you ate trapped in the vicious cycle part...who did your lap was it a renowned endometriosis surgeon? I hope it wasn't a general surgeon they may not know exactly where to look for deep hidden an.....makes me wonder what percentage of laps are negative when women actually do have it growing deep in places like the uterosacral ligaments and pouch of Douglas.....often on this forum women had clear laps yet this condition was found later....my endo was not showing up on MRI in the year prior to my surgery for Adenomyosis of the womb. I was in surgery for two hours and took an hour to come around, get more pain relief and feel ok to return to the ward. Endometriosis had been exised as it had took over 1 ovary my whole bowel and my uterus of course which Id made my peace with was to be taken away due to the adenomyosis. I now have no bladder issues like before (I was almost incontinent and was waking up with a painful full bladder)...sorry to say felt myself wetting myself once in bed as had had alcohol and was in a deep sleep...my periods like yours were horrendous and the reason my career had to cease. I hadnt worked in almost 4 years of marriage...

I was getting the strange symptoms I put on a reply here to one of the users giving you advice, as time went on my life became more horrendously unmanageable with back and pelvice pain and shooting pain being my main reason of being bed ridden. I bled so much I needed to be beside a toilet at the T.O.M it got so bad I had pieces of clot in my menses.

It hurt severely to do No.2 it was like labour again at the T.O.M.

I cancelled all upcoming plans and put friendships on hold. I often drank on painkillers to hold functions like Christmas.

I paid for a Hysterectomy in the end as the wait for me was a total of 22 months, I live in Northern Ireland and the NHS is in shambles.

You need to be assertive and tell them you want that pill to help kick start you. It's a terrible situation to be in when you can't actively lose weight. Every single period knocks your fliw if you are like me i woukd have ate to ferl I was giving it the fuel ir needed to break rhrough and on a diet it was drawn out and stalling until I "fed" it....I was a successful dieter before with hiit training 4 times per week but pain and abdomen swelling put that to bed for me, I was terrified I'd hurt myself further, not knowing what Adenomyosis was doing to me inside. I didn't know of the Endo at this point.

Sex always hurt me not disrespecting my partners but no one was that privileged to be causing me this 'banging off something higher up shooting pain down my legs' I dunno if it was the Endo but it's gone now and as I had a Hysterectomy so are my womb and cervix. Sex is enjoyable, proper penetration is enjoyable for the first time in my life.

I really feel for you as exercise should help your condition all round and that pill could give you a confidence boost and get you started.

If you request an mri can they look at you for uterus conditions like Adenomyosis as I believe it caused me great pain and pressure all of my teenage years 20's and 30's. It's not necessarily found to be caused by a pregnancy. I know mine was present before as my bladder was terribly week and whereas now it is not, that was gone as soon as I woke up from my operation and almost 5 months on I still cannot believe how little I urinate compared to previous.

You need to consider possibly taking a break from your periods, could you try the Depro injection?

I don't think that ^ name is right but others on here gave shut their ovaries down too, I believe it's a chemical menopause type thing. I don't believe the Mirena coil agrees with all ladies with intense period/pelvic pain / possible endometriosis/ adenomyosis it certainly was hell on earth for me and my body rejected its implantation in my womb. 7 months of pain, pads and still bleeding on it....

Good luck.

Please hang in there. For many years I felt my life was cursed and life was over due to these conditions.

You will get a resolution in the end, take care.

Helly.

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