Advice required please-several issues cysts, mass, ovary removal and hysterectomy
Hi guys. I had an investigative laparoscopy done in sept due to several issues; pelvic pain, unable to get pregnant, periods every 2 weeks that last 10-12 days each time and query over endometriosis.
They found a mass/adhesions that were joining my ovary, Fallopian tubes and bowel all together. Both the gyny and the bowel specialist do not have any idea what this mass is. Thankfully they are now pretty sure it's not cancer. I am due to have an op on 26th jan. The mass I think has caused my bowel to narrow, however they have now also discovered I have ulcers all over my large intestine. I will be having a bowel resection done. However the mass has also made me infertile and ivf is my only solution. Me and my husband dont want to go down that route. They need to remove my left ovary and Fallopian tube (the mass is concentrated more on my left side) but the gyny spoke of a hysterectomy (but he did say he would try to leave my right ovary in as it's not as damaged as the other one. However the bowel specialist has said I do not need my womb removed.
I am quite confused, the gyny only suggested leaving my ovary in after I asked about going through an early menopause, something that no-one has spokento me about, and it was only mentioned when I brought the question up.
I have accepted I can't have children, but if I am offered a full hysterectomy, I don't know whether to have it (I an 37). Also they have said that they don't believe the mass has caused my period problems. Thing is if I am always going to have long periods now then I am wondering whether I should have the hysterectomy. Does anyone know if there are any tests that may determine why I have having period problems? Until 12 months ago my periods lasted for 5 days and I always had a regular monthly cycle. They have also said my ovaries are enlarged and irregular in shape, they think caused by the mass. I have also found out I have several ovarian cysts.
I know that the bowel resection is a major op and that a hysterectomy is too, but can anyone give me an idea of the recovery time for both a hystectomy and an ovary/Fallopian tube removal. I would also like to know how much pain there is and any after effects if the op, or possible short and long term problems encountered following surgery. Any of your shared experiences would be appreciated.
Any advice or thoughts on the matter would be greatfully received. I been to my to would has said that she or the specialists won't have the time to answer my questions, which I found annoying as I am having to make decisions on major surgery.
This is quite a lot to absorb in a short time. If you have the time, why not seek out a second opinion on the gynecological part of the procedure ? Your gynecologist most likely recommended a hysterectomy because of your bleeding. Quite often, doctors see a hysterectomy as a simple (?!) solution to having to do more research and tests etc..
I had my left ovary and tube removed last April due to a 9 cm ovarian cyst. In my case, I had it done by laparoscopy so my recovery was about a week or so. In your case, I imagine that this will not be an option due to the bowel resection. I think that you will have to schedule an appointment with your surgeon in order to discuss the following issues:
1. Is a hysterectomy an absolute necessity and if you think so, WHY ? You can make your decision based on the reply .. do keep in mind that you do not have to go through a procedure if you feel it is unjustified. Do not take a statement like the doctor will be too busy to answer questions seriously. You don't give a rat's behind how busy your doctor is and you need to make a decision you can live with. Removing the uterus due to cancer is one thing but doing it to stop irregular bleeding may be unnecessary. The procedure that is most often done for irregular bleeding (ie. bleeding that is heavier than normal or bleeding that occurs at any other time than your period) is a D & C where they essentially "clean out" the lining of the uterus. This leaves the uterus in tact and healthy and is less invasive and less risky than a hysterectomy. There are other options too such as endometrial ablation or if fibroids are the cause of the bleeding, there is now a procedure with "kills" the fibroids by starving off their blood supply. The uterus does not just make babies. It provides support for the pelvic floor and the organs that live there (like the bladder). Be sure that if you are having a hyst that you are doing for the right reasons (a hysterectomy is sometimes a necessity).
2. What is the condition of my remaining ovary and in your opinion, do you think I will need hormonal support after the surgery ? If your right ovary is in tact, you should be OK hormonally speaking and it will carry you into menopause by providing the hormones that you need naturally (the best option). You mentioned having ovarian cysts. If those cysts are smallish (under 5 cms in diametre), fluid filled cysts then they are completely normal follicular cysts that come and go with your cycle. This is actually a good sign as it means that your ovary(ies) are working. Doctors stupidly tell women that they have cysts without telling them that most cysts are a normal occurence on their ovaries (some others, like the big one I had, are not).
3. For the bowel resection, you need to find out if you will have a colostomy bag after the surgery and if so for how long. A colostomy is not always necessary but you don't want to have a surprise when you wake up. The bag, if necessary, is usually there while your colon heals and then another procedure will be necessary to "take down" the colostomy bag. If the bag is not necessary, find out if you need to take stool softeners or fibre supplements and extra water intake. Metamucil is a great natural fibre supplement and can be taken everyday. It is simply psillium fibre (not a drug). Just be sure to take it with plenty of water as too much fibre and not enough water will have a constipating effect (the opposite of what occurs when fibre and water are taken together, which are comfortable bowel movements). You may also want to add a good probiotic yoghurt like Kefir which will help the colon's overall health and may help prevent any infections.
4. Ask about recovery time and what kind of incisions will be made. The larger the incision, the longer the recovery time. I think that the bowel resection will be the major procedure and not the ovary and tube removal so speak candidly with your gastroenterologist or general surgeon (whoever is doing the bowel resection) and find out what you can expect in terms of pain, recovery and regaining bowel motility. Medicine is MUCH better these days and you will find that modern pain control is amazing. If you are staying in the hospital for a few days (which I suspect is the case) then you may be given an epidural for the pain which works beautifully most of the time.
5. Also ask about possible post operative nausea and how this will be handled. Premenopausal women are in the highest risk group for post operative nausea and if you are given something for this prior to surgery, it will avoid an unnecessary problem. As a person who gets easily nauseated, I personally swear by a new anti nausea med called Granisetron which works much like the normally used Ondasetron but is more focussed and lasts a full 24 hours as opposed to the Ondasetron which lasts about 6-8 hours. Your anaesthesiologist will be the one who is controlling this and normally you will see your anaesthesiologist before the surgery. If not, ask to either have an appointment with him or her or request to see them prior to surgery (usually they are on hand to ask you questions prior to surgery though). In my case, I had to get a special prescription for this med as it is too expensive to use in hospital. The doctor prescribed 1 mg to take the morning of my surgery (my surgery was at 8 am) and I was fine for a full 24 hours after which nausea was no longer an issue.
Wow, sorry this is so long but when I saw that you were told that the doctors will most likely not have time to answer your questions, this really ****** me off. It was unclear in your post who said this and I certainly hope that it was not a medical person. I found it useful to write down my questions on a sheet of paper so that we did not waste time at my appointment. My gyne is a very busy woman but what I love about her is that she still takes the time to answer all of my questions. She realizes that this makes for a calmer and happier patient who is co-operative and less stressed. WELL DUH ! I wish all doctors would wake up and smell the coffee on this one.
I hope I have helped you a little. Perhaps someone else will come and answer your post as I don't know a whole lot about the bowel resection part of your procedure. You may want to consult some of the Crohn's Colitis web-sites as I know that some of these patients have experienced bowel resections due to a serious flare up.
I am sure that you will get through the procedure with flying colours. Think about how wonderful it will be not to have the pelvic pain and symptoms that you are now experiencing. All the best.
Hi Estria, thank you soooi much for your very long post! It is so nice that people such ad yourself take the time and effort to reply.
It was my doctor who said that she or the specialists didn't have time to answer my questions. It still makes me angry and disappointed when I think about it.
I have since called my gyny who called me back this evening. Now he is saying that they are not going to do a hysterectomy and may not even take out my ovary and Fallopian tube! Completely different to when I last saw him.
They will see how things are when they open me up.
He also said that the bowel surgeon will be doing most of the op, but he will be in the theatre next door, if he is
He is a lovely guy but I feel like I am not getting any consistant answers. Everytime I attend they seem to disagree or change their mind.
He is going to try to fit me in to see me before the op, but if this is not possible he will see me on the day of surgery. He did say that the mass was covering a lot of what he needs to see,so I presume that when the bowel surgery is done and if the mass is removed then he will have a better idea of what needs doing.
I feel slightly clearer on things but I can't say I am happy as I feel I am having major surgery and am going In a bit blind.
The bowel specialist's secretary has asked me to ring with any questions I have. So I will be on the phone to them tomorrow.
Thanks to much once again for your listening ear and advice. It really makes a difference.
Last edited by Chocolicious; 01-07-2010 at 04:52 PM.
I sympathize with how you must be feeling. If your doctors seem to be changing their minds everytime they speak to you then I would sit down with the gyne, take charge and make your wishes very clear for him. Write things down if you have to so that he does not "forget". For example:
1. If at all possible, I would like to preserve my uterus. A hysterectomy is therefore only to be performed if absolutely necessary (sometimes it really is and under these circumstances we are lucky that we can remove this body part and still function normally).
2. If one or both ovaries are healthy and in tact, it is my wish that these be preserved as well. If humanly possible, I would like to avoid going into surgical menopause after surgery.
These are statements that you would think all surgeons would take to heart but this is not necessarily the case. Also, not all women feel this way and some would rather just have everything taken out and deal with the consequences. This is why it is important for you to clarify your position and thereby maintain control over your body.
In addition, you seem to still have the issue of irregular bleeding which has not really been addressed. Has your gyne done an endometrial biopsy yet ? This is an in office procedure which takes a small sample of your uterine lining to make sure that the cells are normal. Granted that it does not examine the entire lining but it is a good safety precaution for irregular bleeding and most doctors perform this in this situation. If you opt to have a D & C at the same time as the colon resection, then they will be able to examine the entire lining so I doubt the endo biopsy will be necessary. The D & C procedure will most likely take care of the bleeding problem as well. You may want to discuss this issue with your gyne as you don't want to recover from surgery only to have the same bleeding issue and have to have another procedure later on (I am sure that you would agree that one trip to the hospital is quite sufficient).
If you do have the endometrial biopsy, be sure to take a couple of ibuprofen about an hour before as this reduces or totally takes care of any uterine cramping afterwards (a side effect sometimes). Also be aware that you will have some spotting after the procedure (doctors don't tell patients this and this often freaks them out). The procedure is uncomfortable but it is over extremely quickly and you don't need anaesthesia or a sedative or anything so you walk out and go home immediately afterwards. I had this procedure when I was having irregular bleeding problems. These turned out to have nothing with my 9 cm ovarian cyst but everything to do with the oral contraceptives I had been on for over 20 years. I stopped taking the pill, the bleeding stopped and I have vowed never to take any kind of hormone therapy ever again (although one never knows what life will throw at us so never is a big word).
I sincerely hope that your doctors will eventually be able to discuss the surgery with you clearly. If possible, they should tell you that if they find this then they will do this vs if they find such and such then they will do such and such. This is no guarantee that this is what will happen and ultimately you will have to let go and trust them (one of the most difficult things in my life to do but necessary) BUT at least there will be a plan beforehand that you are aware of.
Try not to stress too much if possible. I am certain that you will be very well taken care of by the hospital staff. I still remember how wonderful the staff was when I had my surgery and the experience was nowhere near as bad as I had thought it would be. Just remember that for pain and nausea control, your anaesthesiologist is your best friend so be sure to discuss your concerns with him or her beforehand. Many people don't realize that the anaesthesiologist is a doctor specialist who is just as crucial as the specialist doing the surgery.
You will come through with flying colours I am sure ... your main job as the surgery approaches will be to control your anxiety and to follow the hospital's directions. If you can conquer this then you will be just fine. Oh and be sure to milk the recovery sympathy from friends and loved ones. Don't be afraid to be selfish and spoiled, at least for a while.
Wow..you really have some issues going on, and I think it is terrible how your doctor is treating your. Seriously..I would be running to a new doctor, if it were me.
I wanted to share my story with you...to give you some hope. My husband and I tried several years to have a baby. We ended up going through IVF, which failed. Three specialists told us we had less than a 5% chance of having our own baby. I went to a 4th doctor. I immediately connected with this woman. She took the time to start from scratch with me. As a result...I got pregnant naturally 2 months after I first met her! It's a long story, but one of my tubes has a blockage and she cleared them out. All three of the other specialists told me that my tubes were severely damaged and blocked and didn't even offer the procedure to try and ublock them. I then went on to have another natural pregnancy 9 months later. I have a beautiful 5 yr old son and 3 1/2 yr old daughter who I believe are my miracles. My point is...please don't give up on having children. I have a close friend who had a bowel surgery like you and stage 4 endometreosis...after many attempts and finally finding the right doctor, she now has 3 little boys!
Anyways, I not only suffered fertility problems, but I also just had a hysterectomy 3 months ago, and on Monday I had my right ovary and tube removed. I had the hysterectomy (removed my uterus and cervix) because I had a condtion where my uterus was large and inflamed (i think it is called andromosis). I had very painful periods and lots of bleeding. Since I knew my family was complete, I chose the hysterectomy. I also had some vaginal prolapses to repair (from giving birth2x) and they also gave me a bladder sling. So, I had three surgeries in one. I knew EXACTLY what the doctor was doing and he answered ALL of my questions. The surgery was done laparscopically and i was in the hospital for 2 days. My bladder was unfortunately punctured during the procedure, so I was sent home for 10 days with a catheter. I won't lie...I was in a LOT of pain for a few days. But again...most of that was from the extensive prolapse and vaginal repair work. My good friend had just her cervix and uterus out via laparscopic, and she was sent home the same day and did just fine.
Anyways, fast forward to this month. I went to the ER 2x in lots of pain. Long story short...I had a large mass on my right ovary. I had surgery on Monday..again, laparscopic, to remove the right ovary and tube. The mass was a cyst that had formed, and like you....the doctors are confident it is not cancer. i am still waiting on the final pathology report. I was told if anything looked suspicisious, they would remove my other ovary too. They did not. The recovery from this surgery is soooo much easier. It was a day procedure, an I was home in a few hours. The worst was the Co gas they fill you up with. I am just sore right now, but not in pain.
My biggest concern for you is that your doctor is not keeping you all that informed. I would NOT like going under and not knowing exactly what was going to be done. I understand that sometimes they need to see inside of you before they can fully diagnose you...BUT...they should be able to give you a good idea of what is going on. To tell you , that you will have a hysterectomy and then not..that is a HUGE discrepency.
My advice to you..PLEASE go get another opinion. This could he a HUGE decision that you might later regret. It seems fishy that this doctor discouraged you from another opinion. Most doctors will wecome it...most good doctors that is.
Please keep us informed and let us know how you are doing. I'll be thinking of you.
I called the bowel specialist's secretary who could only answer one of my questions about when I need to have my barium enema (not looking forward to that). Otherwise she had told me to ask questions at my pre-surgery appointment which is this thursday. She thinks there will be another doctor on duty along with the nurses doing my pre-op check. Only thing is this will be someone not involved directly with my case.
Unfortunately due to living in the uk we have the nhs, which is the national health service, and I cannot really afford to pay private. I don't think another doctor would be able to tell me much about my case anyway without Reading my case notes and seeing the pictures.
I think they will remove the left ovary and Fallopian tube, as I was told before it was pretty bad.
I think I will ask about unblocking my tubes and about a d & c, although whether they will do it while I am I'm theatre I don't know. Do you know if there are any other reasons why my periods are irregular? This was another discrepency as one gyny when I had the laparoscopy told me the mass had nothing to do with it, despite telling me the mass had made my ovaries enlarged and irregular in shape; while the doc I am seeing now has said my periods may improve once the mass is removed!
They also don't know what is causing the ulcers on my bowel as tests for crohns disease where inconclusive. The doc hopes to know more after he has had a good look inside.
I also nearly forgot to add that they were originally going to do open surgery, but I have managed to negotiate them to initially try keyhole along with a 3" cut near my appendix as he says he will need to get his hands in there. However he said it may still result to open surgery should things prove to difficult to be done laparospically.
I feel like I need a 2 hour consultation which I won't get over here,( doc's are always rushed off their feet). I think I will just have to make sure that everyone is singing from the same hymn sheet before I go into theatre and have to put my trust in them.
Thank you both for being so good to me and sharing your experience and knowledge. You have been a great help and I appreciate the time you have taken in responding.
Check out a condition called ulcerative colitis. This is different from Crohn's colitis and is difficult to diagnose but it sounds an awful lot like what you have. You are also in the right age group for this.
As for the surgery, it sounds like you will be having the salpingo-oopherectomy (removal of tube and ovary) only .. in addition to your bowel resection. Just make things clear with your gyne beforehand as your gastro seems to know what he is doing. Even if you have a different doctor at your pre-op you can still ask questions regarding the procedure. Bowel resection is standard so you can ask about recovery time, if you will have a colostomy bag etc.. Here in Canada you are usually required to sign something, agreeing to the procedure being done. If your health system is like ours, this should certainly help to clear things up before your surgery. It is usually done at the pre-op appointment.
As for the D & C etc.. this would have to be cleared with your gyne beforehand. I have a feeling that your doctor wants to clean up the obvious problems first and then see if this also solves your irregular bleeding problem. Excessive bleeding is often caused by a thickened uterus and this would have been obvious on an ultrasound. You may want to inquire if they perhaps saw this on the scans and if so, ask for the D & C at the same time. This should certainly make sense to your gyne.
As to the surgery possibly solving the problem, if your ovaries are having problems producing the necessary hormones, this would certainly screw up your period. However, I would think that you would have other symptoms besides your period if you are having hormone issues (mood issues, hot flashes if not enough estrogen etc..). Hormone levels can be checked with blood tests. If your ovaries are working properly, then it is unlikely that the removal of the mass will affect this issue. Keep in mind that some types of ovarian masses give off hormones and cause imbalances so if by some chance this is the case, then yes I can see the surgery solving the bleeding issue as well.
I hope that everything goes well. I am sure that your doctors will do their best. Just make sure that they know your wishes going in so that you don't have any unpleasant surprises afterwards. Removing organs is sometimes necessary in order to keep you healthy but if not necessary, not removing them reduces the risk of things going wrong both during the surgery and later on. ALL doctors know this. Make sure they know that YOU know this as well.
Don't be afraid to come back and ask questions or get moral support or whatever. Will be thinking of you.
Hi, I am so sorry to hear of your troubles, I had a hysterectomy at 39, I was having very painful periods & docs didn't know why. I had one son at 24 & couldn't concieve again afterwards & didn't know why, anyway the stitches after my son't birth caused massive lesions & adhesions, making my womb, bowel, urinary system all stick together. The consultant said it was that bad he couldn't understand how i was walking! anyway I had a full hysterectomy cervix etc but he left one ovary & fallopian tissue, I'm now 43 & I now have very painful cysts on my one remaining ovary. they did a CA125 test which was high so decided to remove the remaining ovary, they will have to go back in through my old hysterectomy scar cos of the lesions etc, my recovery took just over 6 months last time, cos of the lesions etc. Yes i'm afraid to say it's a huge operation & very painful. I'm now getting more pains from the new cysts & think i'll always suffer because the lesions & adhesions get worse with every surgery & always grow back, I am being honest with you & hope all goes well for you anymore q's pls don't hesitate to ask good luck!
UPDATE-several issues cysts, mass, ovary removal and hysterectomy
Hi, well it's Bern a coupleof months now since my op, so here's an update.
Keyhole was not an option in the end as the mass was so big. They took out 10" of my bowel (I was lucky that I didn't need a colostomy bag), but have a large 12" scar.
I was diagnoised as having diverticulitis.
Under the mass they found two large approx 9cm cysts, which were removed and also my appendix was severely inflammed (they think I have had appendicitis!), so that got removed as well. I was told that they had left all my female organs intact. Doc's were then unsure whether mass was growing from my bowel, ovaries or appendix. However, I got the results last week on the mass. It was endometriosis after all!!!
Thankfully they removed most of that during surgery. I have been told I will always be under investigation now to ensure that the endom doesn't cause the same problems. Could that mean I will need periodic laparoscopys.
Went I went to see my bowel surgeon last week he also told me part of my left ovary was removed which they didn't tell me originally. he has also now said that I havn't got diverticulitis but it was all endometriosis.
I think though he has forgotton about my colonoscopy results which showed ulcers all over my large intestine. So my next question is could endom cause these ulcers inside my bowel?
I didn't see my gyny before or after the surgery, and nowmy follow up appointment has come through for October! My GP is trying to sort that one out as I have lots of unanswered questions. I don't know how I stand fertility wise now. Bowel doc also said in do many words that perhaps they should of done a hysterectomy due to the amount of endomi had and suggests I discuss it with him.
I was in hospital for 6 days for the surgery. I was only discharged for one day and was readmitted with complications. I was vomiting for over 9 hours. I felt very unwell. My gp wasn't concerned, but my consultant wanted me back in hospital. It turns out I had a loop in my small intestine stopping food from passing through, a pocket of trapped air, bowel ileus (bowel had gone into shock and shut down, fluid around liver and in pelvis and a burst abscess. Not good. So I was in hospital for another week and was nil by mouth for 6 days. I didn't realise how serious it was until recently. They had to open dome staples to let the infection drain and then my incision came open by about 8 cm. I have been having it dressed daily for nearly 2 months but thankfully it has now just closed. Yay!
I was due yo go back to work this week but finding I am extremely tired. Is this normal? I have had blood tests and they have come back fine but can't understand why I am feeling like this. I didn't feel this bad when I had my surgery. Any suggestions?