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UC - birth control - bloot clots - consistent bleeding

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Posted 2/1/2008 5:03 PM (GMT 0)
hello,

i have been experiencing increased menstrual cramping and bleeding from the time of ovulation (minimal) until the end of my actual period (massive clots the size of a quarter, but little intense bleeding). i have been going to an acupuncturist to regulate my cycle, but i haven't seen the effects i want. i have found a diaphragm to be too painful to use and condoms are not an option (no lectures, please, just being honest) for my partner and myself. i am fearful of using the pill for all sorts of reasons, including the increased risk of blood clots and possible interference with my now stabilized health, though my GI and OB/GYN are pill-positive. part of my concern stems from the fact that i had a blood disease, also autoimmune, as a child that related to an inability for my blood to clot (ITP). i don't want to be or get pregnant, and i want to regulate my menstrual cycle, but am uncertain how to achieve this outside of the pill. how have you responded to the use of the pill with the following medications? all comments and suggestions welcome.

6MP - 100mg
Asacol - 12 pills daily
Welbutrin - 150mg (i think; looks like a horse pill!)

past drugs include seven, eeks, cycles of prednisone.

thanks...
Posted 2/1/2008 5:09 PM (GMT 0)
hey. I am a HUGE fan of my IUD (Minera). Has you considered an IUD???? They were very popular in the 60s, then got bad press in the 70s, and now are back. you don't get much of a period on one, so if you want a period I guess that is something to think about, but mines is really great.
Posted 2/1/2008 7:15 PM (GMT 0)
I was going to suggest looking at the new crop of IUDs, too, as a birth control option.

Have you seen your OB/GYN to make sure you don't have a gynecological problem that could explain the increased cramping, bleeding and clotting?

I've been on a low to moderate dose pill off and on for years with no problem; however, I'm not on an immunosuppresant drug, nor do I have the other health issues you mentioned.
Posted 2/2/2008 12:54 AM (GMT 0)
I understand your reservations about the pill; I quit taking it for several reasons, with fear of blood clots among them. I frequently had heart palpitations on the pill as well, but the worse thing I noticed about it though was that it did a number on my libido! I didn't actually notice the effect on my libido until I quit the pill and it went (skyrocketed!) back to normal. I know that the pill seems to be protective against ovarian cancer, but I really didn't like the idea of putting artificial hormones into my body or supporting the pharmaceutical industry any more than I had to.

Have you considered getting a tubal ligation or uterine ablation? My fiance got a vasectomy two years ago so I could get off the pill, and it was the best decision we've ever made! A vasectomy is definitely the best choice if you have a long-term partner who is willing, as it is much safer and easier than a tubal. It was also 100% free! (Yay Canadian health care) It may be a bit difficult to find a doctor willing to do it, but we found a willing urologist on the second try, my fiance was 24 at the time without any kids. Trust me, it's worth it to never have to worry about birth control again. yeah
Posted 2/2/2008 1:35 AM (GMT 0)
I recently quit taking Loestrin 24 Fe pills. I didn't notice any change in bms, I was still on-an-off flaring as always. I was on Remicade the whole time. I liked how my cycle was shorter, lighter, no cramps, and it came like clockwork. I only quit it because I felt very moody and would cry all the time. At first, I'd say it increased my drive and a few months in, I had no drive at all. I would be more frightened to try an IUD than the pills because of the horror stories I've heard about them, even the new ones. I wanted to try the Nuva Ring but I also was having pain and long periods and pelvic pain and my Gyno told me that the Loestrin pills would help me with those issues quicker and better than the Nuva Ring. After taking the pills a few months, I still had pelvic pain and I had a Laparoscopy exam because my gyno was 90% sure I had Endometriosis. I didn't. I stayed on the pill anyways because I liked the effect on my period and do not want to get pregnant. I quit it when my pack ran out about 2 months ago and my hubby got a Vasectomy today! Finally!
Posted 2/2/2008 3:23 AM (GMT 0)
thank you for such thoughtful responses, all of you. it feels so good to speak to women who have the illness and understand my fears regarding the drugs and their consequences, and not just my fears of the disease itself. thank you.

i've thought about the iud since i have a friend who loves hers, but the fear of internal bleeding, which is a common side effect, has made me hesitant. ok, eliminated it from the list of possibilities. like many folks with uc, i have had more than my share of internal bleeding!

my biggest concern with the pill is that i've read that women who have taken the pill are 30% more likely to develop uc than women who haven't used it... and i did use the pill as a teenager to regulate my period, which was accompanied by severe cramps and the occasional cyst that burst. yahoo! who knows what, if any, role the pill played in the onset of uc in me five years after i stopped taking the pill, but... still... this is one of those facts that makes me fearful... if the pill can contribute to the development of the disease, can it also create complications in women with the disease? my GI and OB/GYN think this connection, while perhaps accurate, will have no effect on me and is not consistent with their experiences as medical doctors, but i am just so fearful of bringing on a flare. i have experienced ten months of healthfulness on my current drug regime after nine years of near-constant bleeding... the last thing i want to do is bring on a flare, but the stress of from such intense vaginal bleeding and my fear of pregnancy is no small thing. stress, as we all know, can worsen our illness or bring on a flare.

i just want to have delicious monkey sex... is that so wrong? teasing.

all that said, has anyone noticed a connection between their symptoms and their use of the pill? worsened bleeding? flare onset? any beneficial side effects? for those of you who took the pill and stopped for diminished libido (which is a horrendous side effect, que no?) or moodiness, did it your cycle remain regulated to some extent in the following months?

thank you...
Posted 2/2/2008 7:14 PM (GMT 0)
Hi, welcome to HW borinquena :) How old are you? Do you ever plan on having children in the future? I can't really comment on the pill because I was only on it in my early 20's for about 3 months. I had to stop because it gave me horrible migraines. I also did not have Uc at the time. But the reason I ask about you having any children is that I recently had the endometrial ablation done for many reasons. I was having extremely sporadic painful (oh my lord did they hurt!) periods including large clots. Also because it was affecting my Uc on a major basis every month. I had an increase of symptoms during that time. But since the ablation, my Uc symptoms have subsided greatly and I no longer have to worry about that horrid pain anymore and an added benefit is that I no longer have periods.
Posted 2/3/2008 5:04 AM (GMT 0)
i had never heard it could cause UC! but when i still had UC, my GI wanted me to stay on the pill, because in some women it can help control the symptoms some. After i had my son, i didnt' go back on the pill, and I was worse off than before, now whether that was all because of the pill or not, i don't know, but they did get worse when i quit taking it.
Posted 2/3/2008 11:06 PM (GMT 0)
Hi Borinquena-

I'm going to apologize in advance here, because this info might make things more complicated for you... confused

When I had UC I took the pill for several years, and I felt that it really helped both with my period and with my UC around the time of my period. I had jpouch surgery in summer 2006 and developed a clot afterwards, which was most likely largely due to the surgery. It resolved with 6 months of blood thinners and I am fine now, but it came with the result that I am instructed to never take the pill again because ever having had a clot is a risk factor.

Upon further questioning my doctors about my options, I was told by numerous doctors (gyn, pcp, vascular) that ANY birth control containing hormones carries the risk of clotting. This includes the NuvaRing and even the new IUDs that are coated in hormones, as well as the pill and the patch. If clotting is truly your main concern, this is definitely something to be aware of.

Once I finished my blood thinners I was able to get bloodwork that identified my propensity for clotting as well as the risk factors (heredity vs hormonal vs some outside factor like surgery). It was a whole panel of tests, and required a lot of blood but they can find out all sorts of things. If your fear of clots mainly stems from your past issues, these tests might be able to better assess what your risks are now. I don't know the name of it, but my gyn knew about it so your doctors should know what you are talking about.

Also, in case you ever get to the point of having your colon removed (or for others who may be considering this) I learned after my clot that when the sick colon is removed and the inflammation levels in the body drop suddenly it is a risk factor for clots (more so than just your average surgery). Taking the pill near the time of surgery or right after can increase these risks if the pill happens to increase your clotting risk (which there is really no way to know). So basically, if you are having surgery just be aware.

Hope that was at least a little helpful.
Posted 2/3/2008 11:54 PM (GMT 0)
I've been on and off the pill before and after my diagnosis, with seemingly no adverse effects. I do take the lowest effective dose. I recently got back on it to control my whacked out premenopausal hormones and it worked like a charm. However, I instinctively don't like being on any medication that's not absolutely necessary, so I'm going to start researching other options to control my hormonal fluctuations. My husband has agreed to a vasectomy when I'm ready to try coming off the pill.

Regarding the IUDs, I just read an article after I made the above post that said women who haven't been pregnant have a higher rate of spontaneous expulsion of the IUD. The thinking seemed to be it was because their uteruses were smaller. I thought that was interesting.
Posted 2/4/2008 2:55 AM (GMT 0)
Wow. Thank you so much. Liz, Summer, Princesa, Sherry and those of you with creative handles: I feel such a measure of relief. It is hard making these decisions with doctors and friends who empathize but don't know the quirks of my colon and uterus. I appreciate the honesty and diversity of suggestions and experiences.

Liz, I will ask my gynecologist about this test re: clotting, which sounds like something that would make me feel better, if not help me and my partner in selecting the right birth control measure. While I am uncertain about having children (of shared genetics), I am not comfortable getting sterilized at present, and I would not wish for my partner to make such a decision now (he's 26, and I am 32). Based on the research I've read and the comments I've received here, I leaning towards the pill. It did alleviate my teenage menses angst, and it might be effective for me now in reducing my bleeding and preventing pregnancy.

I am seeing my OB/GYN on Wed. Pill-positive he is, but also supportive of acupuncture and my rational (and then some) concerns. I am going to propose taking another month to see how the acupuncture works in regulating my menses with the intention to start the pill in March. Hopefully, I can have that test in the next month if it might assist me in making an informed decision.

THANK YOU!

Elena (la borinquena)
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