Endometriosis severe pain 18 months after 4th excision surgery and mirena

[Lily1986]

Endometriosis returned after excision and mirena iud

After 13 years of pain I was finally diagnosed with stage 4 endometriosis 6 years ago.

It had obliterated my bowel, Fallopian tubes and uteral sacral and round ligaments, it had attached my womb to bowel, pulled and stuck one ovary to the front of my stomach and stuck the other on my bowel.

I have had 4 operations for this. The last one excised all disease, removed both tubes and left ovary. I had mirena coil inserted during surgery. I’d had previous excision surgery but it had still returned.

I had a chemical menopause prior to my last surgery too.

The mirena has stopped my periods which is great as I no longer get the horrendous contraction type pain I used to get.

But I’ve been left with a constant burning and pinching pain. And a pulling heavy sensation and constant cramping on the left hand side which is the side I had the ovary removed.

Also I’m continuing to have issues with my bladder, needing the toilet at least 40 times a day!

I have currently signed off work long term and doubtful whether I will ever be able to return due to the pain caused from sitting down. Which is really getting me down.

I saw my gynae the other day and he was reluctant to admit the endo had returned already (but I know how quickly it returned after previous surgeries) and was very confident the mirena coil was doing it’s job.

He diagnosed the pain I now have as scar tissue damage, adhesions and permanent nerve damage. And advised the only surgery option left is a total hysterectomy but even having that I would still suffer with nerve pain and bladder problems.

Anyway, he has now recommended I try amitriptyline, the gnrh analogue injections again and oestrogen patches. And has also referred me to a urogynaecologist regarding bladder problems.

Has anyone else had a similar experience?

[Lindle]

Hi. Which endo centre is it as some are more advanced than others?

[luthien]

Hey, just come across your post.

As it's private and a quick google of him on Nuffield Health does suggest he knows his stuff. Could you perhaps request your case be discussed; private hospitals usually have meetings weekly / monthly to discuss "unusual cases" with other specialists / other related departments so they can come to a conclusion regarding treatment.

Also ask him which specialist urogynaecologist he works with - quite often they work well with certain ones whom also know the same things they do - overlapping specialisms.

Your private insurance should allow you "freedom to choose" which means you can go onto their website and select a specialist then say you'd like to be referred to .... through your GP. Check out my WPA insurance, there's a tab for choosing your specilaist; that'll give you an idea of what to look for. Private to private referrals - make sure it's covered in your insurance - I had to go back to my GP to make sure they approved of the referral so it was covered, otherwise you skip that step which does make it quicker but then it could be at your own cost..

Just some thoughts

[Lily1986 in reply to luthien]

Aw thank you very much for your help.

I knew the name of the private urogynaecologist and just rang the insurance and they will cover my first consultation but then will need to provide future treatment plans to check they will cover that.

What they don’t cover is the gnrh analogues or any hormone treatment so waiting to get them on the nhs.

[luthien in reply to Lily1986]

Yay, that's good.

Yeah the treatment plan is the same as what they said to me for mine; it's just so they have it on record. Private doesn't cover any fertility stuff or cosmetic stuff, so they need to make sure it's not one of those categories that's all. They tend to favour actual surgery over hormones for endo or related issues, which is good.

[Lewisisgreen]

Did they see any evidence of adenmyosis during the lap?

[Lily1986 in reply to Lewisisgreen]

Yes sorry I forgot to mention that. He said I had adenomyosis but was hopeful the mirena would help it. X

[Lewisisgreen in reply to Lily1986]

Ah ok.I have the mirena too, its stopped most of the bleeding but the pain is worse, with -amongst a million other symptoms! -Pulling cramping in my abdomen and a constant heavy sensation in my pelvic area, hips and legs.

My consultant is convinced the my adenmyosis is being effectively treated with the coil; as the bleeding has stopped and that the pain is related to something else, either endometriosis or bowel- which it could be in part at least.

He point blank refused to consider that the adenmyosis can cause a whole range of symptoms and chronic pain 🤔 frustrating!

I wonder if your adenmyosis could be contributing to your pain levels?

I am taking amitriptyline for bladder pain- burning sensation;which is possibly helping a little bit.

I can imagine how difficult and frustrating it must be so sending lots of good thoughts your way x

[Lily1986 in reply to Lewisisgreen]

Thank you and same to you.

I just find it frustrating that the mirena seems to work for some and it removes some symptoms but doesn’t help with many other symptoms.

I felt bad telling my consultant because he had done his very best in the last surgery and it hasn’t really given much relief apart from the periods.

Do you manage to work with the pain? Xxx

[Lewisisgreen in reply to Lily1986]

Yes it is frustrating isn't it!

I think its helpful if you have a specialist who can see that treatments are not one size fits all.

I'm thinking about not having another coil fitted during my lap. Need to weigh up the pros and cons 🤔

The thing is you are trying your best too and you are still in pain after treatments and surgery so that needs investigating.

It's good the lines of communication are open with your consultant at least.

I dont know if you have had any pelvic physio at all? I've heard some good things about it.

It's an important aspect really as after numerous surgeries and treatments your body has been through lots of trama and needs help to heal.

I would need to go private as it's not available in my area on the NHS. I attempt my own in a way with yoga stretching each day! In time when we can afford it I will be looking into it.

With the amitriptyline I do know quite a few people who use it for nerve pain with success.

I was actually already off work when my gyne problems started to get progressively worse and unfortunately I wasn't able to return. It was a fairly hectic job in the NHS! My issues have been around for 20+ years though.

I do want to get back to work in time but for now trying to get as healthy as I can before my lap. X

[Lily1986 in reply to Lewisisgreen]

Thank you - I will look into the physio therapy and also considering acupuncture.

I really can’t see myself returning to work. I’ve battled through even before diagnosis but it just became too painful & exhausting and there’s no way I can do a good job on the pain killers nor be reliable. Been signed off since start of December.

I’ve worried about money but at the end of the day health is more important.

I’ve had same thoughts on the coil but consultant is dead against me not having it as it will make the return of endo more aggressive.

When is your lap? Good luck with it!! Xxx

[Lewisisgreen in reply to Lily1986]

I've heard some good things about acupuncture too. I think whatever even helps a little is worth it!

Agree about health coming first. I think I had put my physical health on the backburner for so long it got to kind of a crisis point. (Not helped by being dismissed or misdiagnosed by GPs when I did try to get treatment)

So I felt I no choice with not returning to work. I couldn't physically do it anymore.

I'm on a waiting list for a lap now so could be a while! This whole referral process started Nov 18 (not counting the 20 years before that!) I'm on a short notice list though so that could help.

Keeping my fingers crossed for you! Hoping you find some relief x

[Thompson36]

Hi, sadly for some of us this is life with endo despite repeat surgeries and medication. I had 6 previous surgeries and full hysterectomy last Feb due to constant groin pain on the left. My bowel was also stuck. I have intermittent sharp/pulling groin pain and calf pain which is probably down to scar tissue and adhesions and have basically been told that there is no point trying to remove it as it will only cause more problems. It’s so unfair sometimes 😥

[Lily1986 in reply to Thompson36]

Aw I’m so sorry! It’s sounds so similar to my pain.

Thats basically what consultant said to me than even a total hysterectomy is likely to cause more harm than good.

How do you manage your pain?

Do you manage to work?

You are right it is totally unfair xx

[Thompson36 in reply to Lily1986]

My consultant advised the hysterectomy due to the groin pain and adenmyosis. He thought it was due to tethering on the left hand side. We didn’t know about the bowel until he went in. He also said a hysterectomy was the best way to go to remove any later cancer risk. I recovered well from the hysterectomy but the groin pain was back within 6 weeks so he either didn’t get to the spot or it’s deeper than expected. This was all done privately but can’t afford to go back as it was under self pay. I’ve seen someone since on the NHS but like I said they were reluctant to do anything and didn’t want to consider it was deeper infiltrating endo. I am managing to work but have a job where I can get up and about and walk a lot. I find sitting for long periods makes it worse. Also have pain before bowel movements so try to stick to a high fibre diet and not eat bread during the week. Pain wise I try to manage with amytryptaline 25mg at night and co-codamol if it’s bad. I try to avoid the opiate painkillers if I can due the affect on the bowel xxx

[Lily1986 in reply to Thompson36]

I have the pain before bowel movements too, it really stops me in my tracks.

It’s a shame it’s not in nicer circumstances but it’s really nice to chat to someone who has such similar symptoms. Sometimes I feel it’s just me!

I think I will need to look for a job in that allows me to move around more as I’m sat down 9-10 hours a day and it just isn’t possible at the moment.

Thank you for your messages I’ve found them very helpful xxx

[Thompson36 in reply to Lily1986]

Always here if you want a chat xxx

[Afrohair in reply to Lily1986]

I would have thought sitting down more was easier I stand a lot and it can get really painful sorry you are struggling. I’m in a position at work where a lot of lifting and pushing is involved in retail I now do a lot of till work standing but sometimes standing is painful I thought I should look for a sitting job sigh * seems whatever we do we are screwed

[Lily1986 in reply to Afrohair]

I can imagine standing all day would be a battle too.

And lifting will probably worsen things too.

I’m only really comfortable lying down and even then I can still feel it but no as intensely.

Xxx

[Endoadenoscorp]

ooooh I realise this is a really old post now!

So sorry to hear of this… I really resonate with this experience you’ve had and have experienced something somewhat similar

[Endoadenoscorp]

I’ve just come across your very old post now and I really resonated with your experience!

I’ve had a similar thing being told by my specialist that my pain is likely caused by my adenomyosis and that despite my MRI showing Deep Pelvic Endo they think it’s scar tissue and adhesions rather than Endo recurrence their reasoning was because they put me on mirena and operated 19 months ago and doubts it’s back, even though my symptoms have sky rocketed and pain has become beyond unmanageable since surgery.

They also advised the only surgery option they suggest is a Total hysterectomy but that even having that I wouldn’t be guaranteed pain relief and that only 50% of cases are successful and mentioned risks of osteoporosis etc and that it could exacerbate pelvic floor and bladder pain issues and affect sexual function 😞

She’s more keen for me to do gnrh analogue treatment or an alternative progesterone visanne (in addition to the mirena coil I already have)

She is totally against a repeat excision lap (even though I’ve only had two laps and only one with excision as first one was investigative and they missed the Endo) as she thinks I won’t benefit from it 🤦‍♀️

I’m new on here and posted more about my situation on a separate post but I’m definitely feeling like my consultant is reluctant to accept that the Endo is back 19 months post excision surgery and I think it’s odd.

I also feel alarmed when surgeons seem ok to risk the Endo getting worse by not wanting to do a repeat excision lap.

They said they think a hysterectomy is going to be better and that it would be done by a specialist not them so I almost feel like there is a reluctance to want to operate on me again since I’ve been in worst pain since they last did.

The latest MRI is showing my affected area in exact same place as surgery was performed. But surgeon says it’s just adhesions MRI says adhesions and Deep Endo 🤦‍♀️…!??

I’m not keen on the treatment options they have offered me and am considering trying to get a second opinion through private referral from gp if possible although I’m not hopeful that will happen with ease.

I’m under pelvic floor, bladder, bowel, urogyn and a host of other clinics btw and nothing has helped the pain. I’m on pain killers daily and they even are hit & miss.

I empathise so much with you and all the other sufferers on here 😢

I see currently (4 years on) your still trying to decide between the hysterectomy options or excision 😔 such a hard hard road on this journey! I truly hope that you will get substantial improvements with whichever option you decide to go with I don’t know how one is supposed to make such a choice not knowing the outcomes… 😔💖

Keeping positive hopes for you