Hi, after years of pain, hospital admissions, ops & tests, my new consultant thinks I have Adenomyosis. Anyone else have this?

Hi there, after years of being in pain and hospital admissions, scans & procedures, I now feel like I'm getting somewhere after moving to Oxford and having my care taken over by the fabulous Pelvic Specialist. I have had my appendix removed unnecessarily, more scans than I can count, and in the end a diagnostic Laparoscopy, which discovered I have Pelvic Congestion Syndrome and am also riddled with adhesions, many of which they couldn't laser due to the increased amount of blood vessels. This year has been my worst for pain, with 6 hospital admissions to date. My latest appointment was last week, and the Doctor said she now thinks I also have Adenomyosis, which I had never heard of. I was wondering if anyone else on here suffers from it, and what course of treatment you were offered?

17 Replies

  • Adenomyosis is quite common but patients are rarely told they have it. It can be focal ( occasionally surgery can be done for this but it isn't straightforward ) or diffuse. There are very few medical treatments ( hormonal ) and those that exist are not very effective unfortunately. It sounds as though you have other conditions in addition to this.

  • Thanks for the reply, I had never heard of this condition and some things with its description fit my symptoms and others don't. Although it's interesting that you say about focal and diffuse as they seem to think that this condition is the main cause of my recent pains, but as I've had Ovarian Cysts in the past, that my muscles and nerve endings have "remembered" this pain, so every time my adenomyosis plays up these do too. They are recommending an MRI for a confirmed diagnosis and 3 month trial of Prostap, along with Gabepentim (I think) to take at night with my Amatriptaline. I'm completely overwhelmed by it all, but after several years of suffering am willing to try anything. Does that sound like the right route to take? It's all quite confusing

  • This sounds a reasonable way forward to me. Let us know how you get on, hope things improve

  • Hi Chocolate-lover I'm so please to hear you are finally getting some where with your diagnosis and hope that things will move forward for you from here on.

    I have suffered with chronic pelvic pain along with all the usual problems (malfunctioning pelvic floor) for nearly eight years now and have not achieved any real defiant diagnosis to date.

    I'm now wanting to change tactics and seek a specialist in the field on the nhs or private if required.

    Therefore I am very interested to know what Pelvic Specialist you are using in Oxford? This would be a great help to me. I am currently in Sussex and able to travel far and wide. Look forward to your reply and updates on your improvements :)

    Keep positive and best wishes.

  • Hi Love_Life, thank you for your kind words, after several years of suffering I also hope things move forward, but I,ve been here before where they are convinced its one thing only to find out it's not. So I'm not getting my hopes up just yet.

    We moved to Oxford 16 months ago, and I can honestly say that the care I have received from the team at The John Radcliffe Hospital has been exemplary, nothing is too much trouble and you never feel like your wasting their time or that it's all in your head. My consultant is a lady called Jane Moore, and she specialises in pelvic pain and pelvic conditions, and what an amazing woman she is! I had an appointment last Thursday with her, where she recommended an MRI scan, and a course of injections, and I have my first injection tomorrow and the MRI on Thursday! I'm amazed at the speed this has happened, and would highly recommend this team to you.

    I hope you don't have to suffer much longer, and soon have some answers that help you.

    All the best

  • Hi Chocolate Lover, I'm really reassured to see your post, I'm due to see Jane Moore tomorrow too at the John Radcliffe. I have suffered with chronic pelvic pain for 10 yrs, had laps, fibroids removed & adhesions & bladder ops. I have had a enough & I want some answers & plan of treatment as my whole life is suffering!! I have been refered by my gp & gynae consultant. Fingers crossed for tommorrow. It looks like from your post she gets things done!

    Hope all goes well with youxx

  • Hi sweetie_78

    I'm sorry to hear you've been having so much pain over the years, mine is a similar story, that is until I met Jane Moore! Now things seem to moving forward, and even though I know there's no cure for some of my conditions, she knows all the best tablets & treatments to make life more bearable.

    How did your appointment go? I hope you came away with some answers and more of a plan for moving forward.

    I look forward to hearing from you

  • Hi chocolate lover, Appt went well yesterday, Jane Moore is lovely we talked about everything and she has come up with a plan. She thinks I have endo in the lining of the womb, hypersensitive nerves in the pelvis & condition to do with pelvic muscles!! Going to have mri & physio in new year. Finally a plan!! Been in agony since I saw her she only touched & felt tummy IN AGONY! Glad she never gave me an internal!! How did your appt go?x

  • Hi

    Was reading through and realised I didn't reply to you, how rude of me I'm sorry about that. Well, I had my MRI and have since had my second implant, so only one more to go! I get my results on 13th feb and it can't come soon enough as I've been in agony since Friday, with a trip to A&E thrown in. Have you had any physio yet? I would recommend investing in a TENS machine too, I've got one and it's been a life saver!

    Keep me updated oh and happy new year! X

  • Hiya, Sorry to hear you had a visit to A&E & have been feeling really crap!! I haven't been great either! Had a trip to the access centre & out of hrs! Pain was through the roof! They thought I wa constipated & it had flared up my pain but with all the medication I'm on hardly surprising, does anyone else suffer this if so what do you take? Got mri on Monday & physio in Feb. I've got a tens haven't used it for a while. Really tearful at the mo in a low mood. Pain just gets you down, sometimes I just don't want to be here...Sorry to go on. Thinking of youxx

  • Hi Chocolate-lover, thank you for your reply, the team you are under sounds very promising for you and exciting. Do let us all know how you get on.

    This is my next step to find a consultant that specializes in pelvic pain and pelvic conditions for men which I guess is an easier diagnosis.

    I hope all goes well, best wishes :)

  • Hello Chocolate-lover, I was quite interested to read that they think you have Adonomyosis!! Have you been suffering from Endometriosis?? As this is what I was suffering with some years ago now, which is very painful but when eventually after many treatments and Laparoscopys and suffering with Adhesions etc the Endometriosis went, but I then started with other pain, eventually I had to have a Hysterectomy and when the pathology report came back they said I had Adenomyosis which grows on the Muscle of the Womb!! The Gynae Doctors told me that there is no form of treatment to get rid of it except having a Hysto, it can be located by an MRI Scan but that's all, no treatment can remove it from your body or get rid of the pain you suffer with!! Good luck and hope you become pain free soon. Let me know how you get on... Love Aisha.x

  • Hello Aisha. I have had every test available for endo, even a laparoscopy, but they have never found it. I do, however had adhesions and Pelvic Congestion Syndrome, and now maybe also Adonomyosis. I have my MRI tomorrow, so will see what that says and take it from there. It's a shame to hear though that you were told there is no treatment, and I may have to suffer with pain for sometime to come. After years of suffering already, i was hoping a confirmed diagnosis would help!

    My consultant has said before she's not prepared to give me a Hysterectomy yet, as she feels this will only cause more problems in the future, so it looks like I may have to grin and bear it.

    Has your pain completely disappeared now, after the hysterectomy? Look forward to your reply x

  • Hello Chocolate-lover, i am very sorry for the late reply but i've been laid up with a stomach bug that's going round at the moment.

    Well by the time you get this you will have had your MRI and i would be interested to hear the results and what they will do for you to treat Adenomyosis!!

    I was told that this thing whatever it is grows on the lining of your womb...it cannot be treated with medication and the only way to get rid of the bad pain it gives you is an Hysterectomy!! i printed off some great literature which explains all about Adenomyosis and it says the same Hysto will only cure you....

    My pain has gone now and the only thing i have to endure is my IBS which gets very painful.....

    I hope i have been of some help to you?!

    I look forward to your reply...Love Aisha..x

  • I will answer these mails after my pudendal entrapment surgery at1pm today with Dr Antolak in Minneapolis.My sad and very poor quality story is on YouTube . Judy Rentz,pudendal neuralgia.I pray it will help others !

  • Bless your heart! I don't know your problems,but I do know pain.I have suffered horribly for almost 8 yrs. Just had surgery wed.forpudendal entrapment.Praise GOD I'm on my way back! Judyr r

  • Hi there, Im just recovering from my first laproscopy. I am 28 years old, iv had ongoing problems for years. they always put it down to ibs and anxiety. I came off the pill in April and my pain has been getting worse. Pain before and after going to the toliet, sex hurts, painful tummy, tired, heavy periods, clotting. I went to see a specialist gyneo and he said he was 90% sure i had endo. Tuesday i had the laproscopy....guess what...he found nothing!! Im so confused as to what is wrong with me. HELP!! i feel like im going mental

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