Adenomyosis pain

[Alaine1]

I have a history of endometriosis and 18 months ago I was diagnosed by a endo specialist with adenomyosis. The pain has been almost constant as I bleed for three weeks out of every month. To date the zoladex is the only treatment that has stopped periods and the severe pain that causes me to be sick and pass out but runs out early so the excellent pelvic pain specialist I see at a London hospital changed it to every three weeks which worked well for the pain. The zoladex now seems to have stopped working and I've been bleeding non stop and in pain daily having to take morphine SR tablets and liquid for breakthrough pain. I also take gabapentin, amitryptline, for nerve pain/pain memory, use a TENS unit for the severe back pain I get during my period but can't use it on my pelvic area. I'm seeing the urologists next week as pelvic pain specialist has given a provisional diagnosis of painful bladder syndrome/IC but the pain is different and although the medications I'm on haven't helped the pain or frequent urination the pain isn't as severe and feels completely different. I'm also seeing the pelvic pain specialist again next week because of the pain and the bleeding is too much and I'm struggling to cope.

Has anyone any other suggestions to help with the pain as the pain management consultant isn't very helpful and although I'm due to see the specialist nurse in the clinic in two weeks timefor help I'm not feeling too optimistic especially as I've tried all the treatments for endo/adenomyosis so there is nothing left to try and I really 'want' a hysterectomy but consultant not keen as I will still probably have some nerve related pain and she wants me to be able to have children in the future which isn't an option because of the pain with period and heavy and prolonged periods which leave me exhausted, feeling unwell all the time and frustrated. Also has anyone heard of or experienced zoladex not working anymore after being on it for just over a year. Any help and advice gratefully received

[PPSN_JudyB Pelvic Pain Support Netwo]

Zoladex is a GnRH agonist and it doesn't always work with adenomyosis. These medications are also not effective with adhesions, nor bladder pain. Have you ever tried the Mirena ?

[Alaine1 Administrator]

I've tried all treatments including the mirena for two years and it did nothing for the pain or bleeding. Zoladex was the last treatment to try and I'm now in lthe situation of having nothing left. I'm not too concerned about the bladder pain as I have other options left to try. It is the adenomyosis pain that is disabling and has the most impact on my life. The zoladex had been working up until January when it stopped controlling the bleeding and pain. I'm seeing the specialist next week so will see what she says as I want my life back. I can live with the bladder pain as it can be controlled with dihydrocodeine and hopefully when I have other treatments alongside will reduce the need for pain relief

[xcht in reply to Alaine1]

Hello, I'm sorry I'm not able to help in any way with your struggles. I was just wondering how you were diagnosed with adenomyosis and whether your specialist was able to help? I have chronic pelvic pain and no reason for it. had numerous ultra sounds and one laparascopy - they found no endo tissue and now I'm just left with no explanation.

Really sorry about your pain and I hope you got some help since posting this x

[xweeta]

hello,

There is a procedure called Uterine artery embolization (en.wikipedia.org/wiki/Uteri... that that is use to reduce fibroid and adenomyosis. however, the efficacy is not well established, regarding the treatment of adenomyosis. you can ask your doctor about it.

Diffuse adenomyosis should not be operated, but there are radical surgery's for adonomyosis in causes of severe pain and hemorrhages (like this: youtube.com/watch?v=Ga8XwXu...(Not working as expected?).

I also have adenomyosis and endometriosis and bladder pain (during urination and after) and my continuous birth pill doesn't work anymore...I bleed every day. However, for me it's better then having full menstruation.

Sometimes (rarely) i can stay 4 days without bleeding, and my bladder gets better so I presume that this bladder pain is related to constant bleeding, because of the swelling, edema and inflamation that endometriosis and adenomyosis create.

Cystistat and Hyacyst are medications that improve IC and the bladder pain.

I have read testimonies of women who have recovered and improved quality of life after hysterectomy (in cases of adenomyosis).I understand that you want to get pregnant, so is not an option.

I never used TENS for pain. I want to try it, but why you can not use TENS in your pelvic area (your bladder also)?

[Alaine1 Administrator]

Thank you xweeta for the info. The TENS machine when used in the pelvic area flares up the nerve pain I have even when on a very low setting although my pain management consultant has referred me to the TENS clinic with the specialist nurse although I'm hoping she has some other ideas on how to deal with the pain. The TENS can be used in the pelvic area though so might be worth a try. The TENS for my back pain works extremely well though but as soon as I switch it off the pain returns. The back pain is predominantly related to my periods although I do get a less severe type of back pain at other times so could be bladder related, muscle spasms etc. Have you considered using one for your pains? My adenomyosis is of the diffuse type unfortunately. The zoladex in no longer stopping my periods at all and I've now been bleeding non stop for 5 weeks with a full period, probably wouldn't be feeling so ill if it was just spotting. I think my specialist is very reluctant to offer a hysterectomy as although it would be a cure for the adenomyosis it wouldn't necessarily stop the endometriosis from coming back and I'd still have nerve pain/pain memory as well as the bladder pain. I haven't necessarily noticed an increase with my bladder pain with bleeding although the adenomyosis pain is more severe so probably don't notice it (except when not on period) but realise I'm having a flare up because of the trips to the toilet every 10 minutes on a bad day.

Not sure what my chances are of achieving a pregnancy although it would be difficult as when I wasn't on the zoladex I'd only have a maximum of 12 period free weeks a year. Not even sure if I ovulate even but the prospect of trying to conceive when in severe pain and even being examined internally leaves me in pain for days probably means I will have to accept I will remain childless unless I adopt.

How do you cope/manage your feelings of frustration/isolation caused by the pain on a day to day basis? Just before Christmas my GP signed me off work for two weeks because of the pain and when I returned one clueless colleague said to me 'well at least you have had a holiday' , as you can imagine I was gobsmacked by her comments but had to bit my tongue especially as I was still in pain.

[sweetie-78 in reply to Alaine1]

Hi Alaine1

I read your email & it just sounds like I wrote it! I don't know what to say it's so hard living with chronic pain every day other people don't have a clue!! How do you remain positive when your live is passing you by cos all you do is work, deal with pain & try & sleep!! It's gets you down. I am 35 I have had chronic pain for 12 years Like you it's agony to have internal procdures done & having a physical relationship is so difficult & painful. One of the reasons my ex split with me so having children for me is highly unlikely. I work with them to so thats difficult in it's self. I have had numerous tests, scans, investigations & ops 2 remove fiboids, adhesions & scar tissue. I have also suffered with painful bladder, had cystat & even had my bladder stretched pain was unbearable!!! Still not sure whats wrong pain has been agony since xmas, been refered to oxford & start physio weds, she thinks I have ademonyosis. How was this diagnoised for you? What are the symptoms? Sorry to talk about myself but your story sounds just like mine. Thinking of you.Take Carexx

[Alaine1 Administrator]

Hi sweetie 78

My adenomyosis was suspected based on the clinical history and backed up with a scan. I also had a lap done (second one) and the results from that also confirmed it as apparently the uterus is usually bright red in colour when the normal colour for a uterus is pale pink. I've now had all the treatments and although the zoladex was the last option I hadn't tried (previously had prostap which is another GnRH agonist which failed to stop bleeding and pain) this stopped both the bleeding and bleeding which was a huge relief! Because it was the only treatment that worked I was being allowed to stay on it indefinitely which for me was a relief. My only option now is a hysterectomy which leaves me with mixed feelings really but I can't go back to how things were with only one period free week a month. Can't do it physically and emotionally. If it was 'just' seven days of normal bleeding I could perhaps be persuaded that maybe nothing will stop my periods but your pain will be the only treatment that needs to be focused on

You asked what my symptoms were:

3 week periods followed by a break for seven days before the start of my next 3 week period

Severe stabbing and cramping pain that is focused within the uterus - pain rating 8-9 out of 10 that causes me to pass out and be sick which doesn't help with feeling ill

Pain radiates down the top of my right thigh but I also have an unfriendly ovary which is where the endo was found and during my last lap they found I had adhesions there also. The consultant has suggested it could be pain memory, endo come back? Or adhesions which the scan didn't pick up before I had my second lap. Scans can't pick them up but they can suggest them if the anatomy of pelvic organs are distorted. Although they couldn't find my right ovary whilst doing an ultrasound so possibly suggestive of them. They don't need to be dense either as the ovary likes to move about and anything that anchors it down can cause pain

Back pain although GP has said this is not related but it is a frequently reported symptom with both adenomyosis and endometriosis

Really heavy bleeding - needing to change tampon/towel every hour, sometimes more frequently. Usually wear both to give me peace of mind

Extremely painful cervical examinations/pain when using tampons which is felt deep inside and lasts for days afterwards

Generally feeling ill which is probably due to blood loss,lack of sleep (only manage 2 hours when on period), lack of appetite, feelings of failure, sadness and frustration and wanting to be normal. If I could get rid of one of my causes of pelvic pain - bladder, nerve adeno/endo I would chose adeno/endo without any hesitation

Also doubt I will find my Mr Right especially as I don't know who would put up with me like this, and I have become a hermit again as I'm too shattered to do anything. I've also had to cancel 5 planned dinners with friends because of pain etc. I'm meant to be going with my best friend from work to Bath late May for four days which we planned before the zoladex started to fail. I really don't want to let her down but when I'm like this being social able/in a strange place is my idea of hell especially if I was to end up in hospital. Feel like life is passing me by and I'm watching my friends with their husbands and children do everything I'd dreamed of. I've also had to put my career on hold and my aim to do my postgraduate studies in pharmacology so I can go into medical research has now been put on hold. It's something I've always dreamed of and hopefully I can still do it providing this is all sorted out. At the moment I manage the shoe and accessorise dept in a department store which is ok and pays the bills it's hardly academically stimulating. Hope to hear back from you soon and your appt in Oxford goes well xxx

[bnhefflin]

I was sick for 7 years with this and nobody knew until I had a hysterectomy and they found it covering my whole uterus and stomach muscles. I was told by my OBGYN that to relieve the pain fully a hysterectomy is the only cure and it will cure it and it has like night and day. I no longer have any ovaries or uyerus they took everything (my decision) my aunt had the same thing and they removed one ovary and she's pretty pain free. I've never heard of a medication that would work for this b/c its basically like internal bleeding every month. I'm in the US by the way.