I am absolutley disgusted what you have been through, it shouldn't be that way. I am 39 and have just had a hysterectomy on 19th October 2009. My problem was diagnosed straight away due too my enlarged womb and excrutiating pain, a typical sympton of adenomyosis. With 3 months from seeing the doctor to gyneocologist I had my operation. The problem is not rare but in fact very common so I cant understand why you have not been diagnosed. My advice to you would be to remain strong and tell these medical professionals what you want, It's horrible what you have been through, along with the pain you also have the emotional trauma. Your symptons mirror mine, like i said I had adenomysosis. A hysterectomy is the answer (or subtotal hysterectomy where they only remove the womb. I am not a medical professional but have common sense. You must tell them what you want and not accept anything less. I was told after my hysterectomy my womb was really enlarged and a coil or pill would not have helped. Good luck, dont let em grind you down, their is an answer with a light at the end of the tunnel, I am living proof. Change your doctor if you have to.

Hi Ranj.
Thanks for replying. I did type a reply earlier but not sure if it got lost so will do another. It is soul destroying as it's as if my gyneacologist is saying to me that he either doesn't believe me or that he just cant be bothered to do another hysterectomy. He's not the one going through the pain and as you will know, it's excrutiating. I have an appointment to see a Doctor at another hospital and hope that he doesn't destroy me completely. I really think I may lose it if he doesn't take me seriously or give me answers as I mean business now, now that I have gotten over the very demoralising weekend after being told that it wasn't gynae for the 3rd time. I'm back at work now, no better than I was, but at least i'm busy. I struggle on throughout the day (most of is is sitting but have to get up on occasions), walking is quite painful and then I struggle to get back to my car at the end of the day. I don't want to just sit at home 'again' but may find that I am forced to do so.

Could I ask what you went through as I think I need to take tips? Lol (You have to laugh, or else you'll cry). No, it would be nice to compare with someone who has replied as so far I have written a few post (not just this site) and have had no replies, though almost all of the posts I have read (hundreds) are/have going/gone through what I have, and yourself.
I will post again soon.
SandraBB

There is also a treatment for this....I, myself had the full Hysterectomy...I had no options then...There are now:

"Conservative surgery seeks to remove or destroy the growths, relieve pain, and may allow pregnancy to occur in some cases. Conservative surgery can involve laparoscopy (outpatient surgery in which the surgeon can view the inside of the abdomen through a tiny lighted tube that is inserted through one or more tiny abdominal incisions. Also referred to as "belly-button" surgery.) or laparotomy (more extensive procedure, full incision, longer recovery period). Hormonal therapy may be prescribed along with conservative surgery. Radical surgery, which may be necessary in severe cases, involves hysterectomy, removal of all growths, and removal of ovaries."

I hope some of this information helps...

Caroline

Hi Sandra,

The problem is how do you cope when you are in pain and unable to do anything apart from sit down with a hot water bottle dosed up on painkillers. Thats why it's so important to get it treated. it really can take over your life, affect your work and dare I say it your sex life. I didn't even consider a hysterectomy. It was suggested to me by my gynaeocologist on my first appointment. He originally said he would just remove the womb but ended up removing the cervix as well. 3 weeks now since I've had my op and I already feel fully recovered. I have no pain and bleeding and am driving already. This is not the case though for all patients, some take weeks and weeks to recover, everyone is different. My background is I have lost 3 babys (all boys) in late pregnancy due to a week cervix. When I was 13 weeks pregnant with my son an amazing surgeon cut me open, gently pushed my baby aside and stitched my cervix almost closed so it would hold my baby inside me full term. Thankfully I did not miscarry and now have a 5 year old son. When I had my hysterectomy the surgeon saw that because of the stitch their was alot of scar tissue inside me. I dont know wether my medical history contributed to me being diagnosed and treated within 2 months but it is appaling how you have been treated. If you do not want any more children then I would personally go for a hysterectomy . (I did not need HRT as I kept my ovaries due to my age) No more smears or risks or cervical cancer. My view is why only go for partial treatment with the risks of further problems occuring in the future. My gynaeocologist said my cervix and womb are no longer working or any use to me so why keep them, just get rid of them and carry on with your life. He was so good! The worst thing for us women is we suffer to much guilt so when we are ill or in pain we feel guilty for not being able to do our chores or go to work so we try and carry on. DONT! You are in pain, real pain, sit down, relax, read a book/mag watch TV or just chill. Go with it and dont fight it. Keep yourself as comfortable as possible and dont worry about everything else. Just look after yourself as much as you can, stay mentally strong and dont lets this illness take over your life. Their is a cure and although it makes me sad you are fighting for someone to take you seriously one day someone will.

Get an appointment with a qualified and reputable OB-GYN...Get his thoughts...If you are not satisfied, then see another...Any "doctor" through the Internet can only guess of what you are saying...It is, IMO, a turkey shoot...I wouldn't waste my money on this...I would suggest to get "face to face" advice...Discuss this in person....Learn what you do not know....Good luck...

Caroline

Thanks Ranj for replying so quickly. Also thanks for you input Caroline too.
You wouldn't believe the information that I have found regarding adenomyosis. I really feel that this is my diagnosis and am going to push for a hysterectomy (subtotal). Originally my Gynae said to get rid of the fibroids would mean a hysterectomy and I wouldn't want to go ahead with that, would I?? I did say no as at the time when I was first admitted and not knowing what was wrong with me, I didn't want to go through something that drastic until I was told it was fibriods or even a perforated uterus which was causing my pain. And also, my Gynae said that fibroids would not cause me this type of pain! That was 16 months ago and the hip pain is worrying, I mean, do you really have this much pain in your hip from adenomyosis? Answers on a post please!!!!!! (Though from other womens experiences and posts, there is hip pain experienced)

I asked my GP to refer me to another hospital. I showed her the letter from the online Gynae and I have an appointment on 23rd Nov with another Gynaecologist.
Whilst being off work I have had time to better educate myself, thanks to the advice from the online Doctor, as previously I didn't even have a name to put my symptoms to when checking online other than fibroids (I did a lot of research on a lot of reputable sites. I looked up adenomyosis and the symptoms described me to a tee. So many women, so many years of pain and why, because someone just doesn't want to do a simple test.
The Doctor online was a reputable Doctor (From the US) and asked me to take copies of our correspondence with me to my appointment to prove who he was, his credentials and where he was from plus once I checked out the information he provided, everything he told me was correct and things were now fitting into place. I felt a bit more confident now someone had potentially given it a name. Pity, my Gynae discharged me once again without even doing an MRI pelvis. My problem now is getting someone to check this out and to tell me once and for all if this is (or isn't) adenomyosis. So, now I have a new Gynaecologist I know that once (if) confirmed on MRI I WILL be opting for a hysterectomy. I have 1 daugter and do not plan to ever have another child so don't need to keep my uterus. Pain is agony and the sooner they sort this, or exclude it, the better. I need my life back.
Will post after the appointment or before if anything happens in the meantime. x-x
Fingers crossed.

Sandra B

Ps. Where are you guys from? I'm from Lincolnshire, UK. Maybe they are a bit slower on the uptake here??

Hi Sandra B:

I am from the Upper Midwest in the States...I had my Hysterectomy at age 47...For me this was a big surprise...I had gone in for a yearly check up and had a blood test...In this testing they found that I was anemic...In fact terribly anemic and my blood count was dangerously low..For about five years previous to this surgery I had been having terrible periods...I mean as bad as they could get...Double hospital size pads at night plus two tampons...I still would soak the bed...I can't recall any pain with this, just plain horrible periods with clots sometimes the size of a plum...He put me on iron supplements and medication and sent on to a OB-GYN with the Hospital...This is a very big complex where we doctor...He checked me out and insisted that I be tested for any other thing possible before he operated so that he would not go into me and find a surprise...I didn't find these words very encouraging, but what to do?....First was the thorough kidney deal that was done at the hospital...This I passed...Then the Colonoscopy and test where the first thing in the morning you swallowed some milky stuff and they take Xrays of your stomach was done...After I passed these, he was satisfied that it would be a Hysterectomy....He then operated and completely reconstructed me...Cut from the navel down as far as they could without joining me...Believe me it was sore....He said I was filled with fibroids and also took out my ovaries...At the time I really didn't know too much about this and accepted...Needless to say this was a tough surgery and I was sicker than a dog for about three days...I was in the hospital for five days and then home...Remember this was the good old days when you were allowed to stay in longer...Seeing I do not have my ovaries I use the Estring Disc which I insert vaginally every three months...It is wonderful...

Thinking back on this surgery, I would do it again in a heartbeat...Good luck....

Caroline

Hi Caroline.

Originally when I was admitted, I had and ultrasound of abdomen and blood tests, then discharged. I was admitted again a few weeks later as I had bad diarrhoea with it and coudln't walk. They did a CT abdo and found a lesion in my liver. It was reported as a secondary lesion (cancer). I was mortified as I work in the Cancer Dept, but did manage to keep it together, as I have done for 16 months, or until my laparoscopy. They then did a lot of tests including; MRI abdo, barium enema, flexisigmoidoscopy, 2 hip x-rays. The MRI came back as the lesion being non malignant. I think then, once they realised they weren't looking for a tumour, they disregarded anything else, forgot the reason why I was admitted in the first place (groin, leg and abdominal pain after coil removal) and discharged me back to my GP. That's when I was referred back to Gynae for the 2nd time, then Physio, then the Pain Clinic, then I asked my GP to recommend/refer to a Private Practice in Notts but they referred me to NHS but I ended up back in Lincoln as I struggled walking around Notts for appts. Then I was ref to Orhopaedics, then Surgical for diarrhoea again and another flexisigmoidoscopy, then another admission, then Gynae, then discharged back to GP and now referred to Notts again.
I have been on iron tablets for years because of iron deficiency anaemia, which I can barely get the levels back to any kind of normality due to my periods and huge huge clots, though this is not every menses.

Right now, my right lower abdomen is throbbing like crazy and I feel like I am having contractions plus my right hip is so painful. I just don't know if I can last out another 2 weeks, then wait for an MRI (have rung everyone today to see if I could get one asap), then on list for hysterectomy. I really am screaming on the inside. I just need to put the clocks forward 2 weeks.
The online Doc said that the Mirena coil (hormones) probably was helping my septate uterus (2 channels) which probably had some scar tissue (probably from insertion - though I have read that you shouldn't have a coil fitted in abnormal uterus', but I wasn't told that at the time, just that I had 2 channels and he may not be able to fit it - but he tried and succeded), and once it was removed, there was nothing to help the pain caused by the joining of the 2 tissues (endometrium outside and myometrium inside) - adenomyosis.
God, I do sound like a broken record, but when you're in so much pain, that's all you think about...pain and how to get rid of it, and if someone mentions something that you think may help, you try it and believe me I have tried a lot. The only thing left at the moment is MRI pelvis and hysterectomy.

It does help to get it off your chest and when you read what others are going through and how some have come out the other end feeling like their old selves again, it inspires you to keep pushing until you get the result you want/should have.
Roll on 2 weeks. x-x

SandraBB

This post is being reviewed and is temporarily unavailable.

Hi guys. Thought I would put another post on as I am in so much pain today and have been most of the weekend. I decided that I needed to get very horizontal with my boyfriend as it has been far too long. Women cannot live on bread alone (well, I can't). I convinced my b.f that I would be fine (he's too scared to touch me these days), "get it while I can" I thought. It was definitely worth the extra pain I am suffering now and I went to bed with a big smile on my face which is something that has been lacking for a long time. I just have to pay the consequences and boy, am I paying. OMG, the pain in my abdo and groin, Jesus Christ!! I think also i'm pre-menstrual (early again) which isn't helping. Back on the Oramorph (oral Morphine) and off work, yet again. I had to take 1 & 1/2 days off the week before due to extreme pain after my period.
I'm getting anxious re appt with a new Gynaecologist next week as I am having to start all over again and am worried that he will treat me like I have been treated in the past. I know what I want, but will they support my decision, or just put me on more medication?? How much longer will I have to go through this truly debilitating pain?
Will let you know how it goes. xxx
SandraBB