I'm new! What do you know about Adenomyosis?

Today i had a ultrasound scan and whilst i need to wait to speak to my doctor, the consultant said that i have a little endometriosis but also have Adenomyosis or internal endometriosis. I have a constant heavy pain in the my pelvic area for the last few months and have always suffered from very, very debilitating ovulation pain. Can anyone offer any advice or knowledge?

Many thanks

22 Replies

  • Hi, I've just had a laparoscopy 3 weeks and been diagnosed with endo been treated excised from behind uterus and ligament, and adenomyosis, I didn't realise they diagnosed this through a ultra sound scan, I didn't think endo shows up either, unless server, I would wait to talk to your doctor before you start to think to much about this, who did the scan, ??

    Are you under a gyne doctor or did your Gp send you for scan?

    Any way, adenomyosis is similar to endo but it grows into/inside the muscle of the womb, unfortunately it can be difficult to diagnose, but what you discribe is one of the symptoms I get, it isn't curable with medication, I'm due to see my consultant tomoz, but he has mentioned hysterectomy already after I had my lap,

    I would think they will give you a diagnosic laparoscopy to confirm any thing that shows up on ultra sound and excise cut out any endo found,

    If you have any questions I will try to answer, I'm no expert just trying to get head around it myself and have researched a fair bit.

    good luck and let us no what they say,


  • Thank you. Gp sent me for a scan as i've had pain for a long time. I fast forwarded it and paid to go private as it's been worrying me. I saw a Gyno Clinical Radiologist - he said he could see some endo tissue on left ovary and a mass of liquid inside (blood) in my uterus, otherwise known as adenomyosis or internal endometriosis ?!?

  • Hi, I'm 3 weeks post op from major excision surgery for endo & a total hysterectomy (ie uterus & cervix) removed for Adenomyosis.

    Adeno can show up on a scan. Your uterus may appear enlarged or bulky. Also this may be felt during an internal exam & your uterus may be very tender to touch.

    They can undertake a biopsy of the uterus to try to determine whether it is Adeno. This can either be undertaken under a general anaesthetic (usual if you are having a diagnostic laparoscopy at the same time), local anaesthetic or with pain relief.

    Unfortunately with Adeno it can sometimes be difficult to formally diagnose even through hysterscopy as it can be diffused throughout the muscle of the uretus walls. The biopsy is so small it's like looking for a needle in the haystack meaning it's easy to miss. Even after hysterectomy (removing the uterus) they would not test all of the uterus, only small samples so unless the uterus is obviously enlarged or bulky the sample may not show any evidence of Adeno.

    As such Adeno is quite often diagnosed through symptoms alone. In my case my uterus and cervix were, what my consultant referred to as, very tender" during an internal exam. I say it felt like I was being attacked with a knife! I also constantly had a dull heavy feeling in my stomach as if I was carrying around a bowling ball, irregular and heavy periods, nausea, headaches and sciatic pain most days running down the back of one or both thighs with my legs feeling like dead weights - all symptoms apparently.

    There are treatments for Adeno such as hormonal based meds such as they use in endo and/or meds to manage the symptoms. But ultimately unfortunately the only cure for Adeno is hysterectomy.

    I opted for hysterctomy but my consultant is adamant that it's important to preserve the ovaries due to health benefits. Unfortunately a lot of the research says that even with ovary preservation it is likely that within 3-5years the ovaries will stop functioning meaning the menopause will begin 😣.

    That being said hysterectomy was the right option for me as the symptoms I was experiencing were just too debilitating & tiring on a day-to-day basis. I only had surgery 3 weeks ago so it's too early to see if all the symptoms have been eradicated. However the sciatic pain has gone so I am very hopeful!

    I hope this helps & I wish you all the best.

    If you have any other questions please feel free to ask, x

  • Thank you for your reply. Sounds like you've had a right time of it, but the way you explain like you're carrying a bowling ball sounds very familiar to me. Sad to think the only way to get rid of Ando is a Hysterectomy :(

  • Hi I have adeno and awaiting a hysterectomy which can take up to 8 months.They have put me on hormone injections called prostap sr i was just wondering if you was on these injection before your op and did they work for you.Thanks Sharon x

  • Hi, no I wasn't placed on prostap pre hysterectomy but I was somewhat fortunate in that my private health insurance covered me meaning I could go private. My wait between diagnostic lap and excision surgery and hysterectomy was 2 months.

    However during those 2 month my symptoms did get worse and really impacted on my day-to-day living so if I had to wait upto 8 months I probably would have asked to try something/anything to get me through to my surgery date!

    Are you keeping your ovaries? My consultant was adamant that it was important for me to keep my ovaries due to the health risks associated with early menopause (eg osteoporosis, cardiovascular disease, early dementia).

    Unfortunately there is research to suggest ovaries will stop functioning within 3-5years following hysterectomy but at least that's a potential 3-5years better than none!

    Also just to let you know although I am still only 7 weeks post surgery I am already feeling the benefits so hopefully that will give you something positive to focus on whislt you wait.

    Best wishes, x

  • Thank you for your reply.Yes my ovaries are going too as there is family history of ovarian cancer and stomach cancer.So my gyne is taking everything.Glad you are feeling a little benefit from your op.I did pay to see my gyne private so that i could be seen faster by the nhs as i would have been waiting for 40 weeks just for a consultation then another 8 months as mention earlier for the op.Just trying to get a clearer picture of the prostap injection thank you once again take care and i hope you have a speedy recovery x

  • Hi shazzy I have adeno and had my 2nd prostap injection today, you can ask me anything you want x

  • Hi CK thanks for the reply.I am just wondering during your 1st injection did you see a period.I have just seen a period today and wondered if this was usual thing to happen.Have felt any benefit from the injection yet ?? Thanks Sharon x

  • Hi Sharon yes I did, I bled for 1 week 2 weeks after my first injection, I got told this was normal and this meant the chemical was working messing about with my hormones. Sometimes I do I felt slightly better before my second one but I'm still early days too x

  • OMG 40 week wait just for a consultation!!!!

    I'm so sorry to hear you could be in for a 8 month wait. I really do consider myself fortunate to have been able to have it dealt with relatively swiftly.

    Could you perhaps speak to the consultants secretary and ask if you could be considered earlier if there are any cancellations?

    Yes it sounds like it would be best to remove the ovaries as well given your family history.

    From what I've read about prostap injections individuals experiences really do differ. I know for example years ago I tried zoladex but I had an absolute horrible time on it. My emotions were quite literally dangerous, I struggled to get any sleep due to hot flashes, gained loads of weight and had headaches that I can only presume were more like migraines that lasted all day most days. Yet I've heard other women say it works well for them.

    I guess you just don't know until you try but I would definitely advise reading up on the side effects to help you make an informed decision.

    I wish you all the best and hope you don't have to wait too much longer, Jo x

  • Hi Jo,Thank you for your reply.I did ask when i went to see my gyne if there was a cancellation list i could go on and he told me there wasn't so i just have to hope and pray it is sooner.I have been in loads of pain sine i wrote on here last time so off to see my gp tomorrow.Take care Sharon x

  • I have just had my first gynae appointment after an ultrasound showed adenomyosis and polycistic ovary on one side. Dr said the adenomyosis would not cause my permanent pain but would just increase pain at period or week off pill time. He thinks my pain is adhesions (removed before but no endo found) and that these are caused by endo. The cysts could be adhesions or endo or just cysts. I am on the list for a lap from colo-rectal who insist my abdo pain is nothing to do with them and only listed me after my husband pressured them to look, Gynae are going to communicate with them about the fact they feel a lap is needed and that they think adhesions will be found and possible endo. I have been prescribed Provera to stop hormone release as if it stops pain then they know it is a gynae problem and also to take pill for 6 months with no break. Any further decisions will be taken after lap. Waiting list is long and I am utterly fed up that I am just going to have to "live" like this for months more. Dr seemed quite dismissive of the adeno and more concerned about endo.

  • Wow, sorry to hear this. Thank you for taking the time to reply though. It's really lovely of so many people to respond to my post.

  • Hi.

    I have recently been diagnosed as having endometriosis and Adenomyosis. I had my first laparoscopy 4 weeks ago which is when they found I had these i have been in chronic pain for a year and a half and been off work learly a year. I'm 32 and have 3 children and my family is complete. The surgeon told me that that she removed all Endo but couldn't get the adenomyosis, she said that if I was still in this pain at follow up we would need to consider a hysterectomy, I was really shocked and not expecting it at all. I am now 4 weeks on and the pain hasn't improved so I'm feeling really exhausted off the pain and anxious about what will happen from here. The pain you described is like mine a heavy dragging pain that's shoots down my leg. How old are you? Do you have any children?

    Really sorry to hear you are in such pain.

    Jo xx

  • Hi Jo,

    I'm 36 and have one child. Would like another one but nothing happening as of yet. can you get pregnant when you have Ando do you know?


  • The consultant told me that I would still be able to get pregnant if I wished to have more children. I have heard a lot of people that say if you have a laparoscopy for them to remove the endometriosis that just after there is a good chance that you will get pregnant shortly after the laparoscopy.You are still young I feel I'm really young to have a hysterectomy but there seems to be a lot of menstrual problems in my family my mother had to have a hysterectomy at 30 due to having a 10lb cyst and my sister has pcos. The pill and other hormones seem to work well for some people personally i find hormones make thong worse for me. Have they said you will have a laparoscopy to remove the endometriosis?

    Jo x

  • Don't know about having kids as with a 19 year old that's not on the cards. I think from what I have read that it is possible but that the pregnancy needs to be monitored because of the muscle stretching having problems with the growing tissues within them.

  • My research says you can conceive but chances are you won't carry past 20 weeks?

  • Hi, I just had join to the community today. Well.. I already have more experience with endometriosis and happy to help to anyone.. :) No medicine for it, people says, and it can be true or not.. I am not a doctor, but seeing that you're a new let me share my experience. I had 3 operation in my past. 1 laparoscope, 1 trans-vaginal, and 1 operation through my stomach.. at the third operation I had an infection by the hand of the nurse, who changed the catheter.. I don't wanna talking about it, but don't worry it didn't happen in this country.. I didn't say it to anyone knowing that I wouldn't have a chance to prove it.. But experiencing the following pain at my uterus, I knew what's happened. 4 months later after the operation I had a diagnosed endometriosis again. After the ultrasound the doctors signed me again for an operation.. Well... I am logical person,, not psychical.. So found out that even if my gynaecologist "doesn't believe" that I have some problem at uterus since the last statement, I am going to find out how to make him to write me a receipt with a medicine called "Sumetrolim" that is the same as the Co-Trimoxazole in the U.K. so I told him, that I am coughing, and have some pain above as well and I'd like to cure this before the treatment.. etc. It was big fight, but at finally he had written me exactly the right medicine as I want.. I used it for 2 weeks than went into the hospital for the operation.. Well.. :) the doctor in the hospital examined me, and looked at me like at a ghost.. just asked me who did send me there for an operation.. He just said you are absolutely all right.. don't have any problem with health.. Since that time I am always telling my story to everyone who has the same problem.. My result is the following.. The endometriosys not a cancer, can be cured with medicines, and can be caused by bacterias for ex. from not clean hands and can be something in elation with cold/co-trymoxazole is an antimycotic medicine/ or by fungis as candida.. So you can try co-trimoxazole for first than try an anti-foungus /less risk than an operation/ and always be careful with hands if you have a sex! Keep diet /fruit, vegetables, if you're strong, no protein and no carbohydrate, google it/ Good Luck! :)

  • They can't diagnose on a scan it's only a laparoscopy they must be telling you This is a possibility don't worry too much u til you have a diagnostic laparoscopy xx

  • I got diagnosed with the same last week. I'm waiting for a laparoscapy to find out more. Atm it's all about pain relief for me. If you find out anything please share?

    Gem xx

You may also like...